"Should I let them know I have this?": Multifaceted genetic discrimination and limited awareness of legal protections amongst individuals with hereditary cancer syndromes
Gopalakrishnan Ridhi, Sam Jordan, Butkowsky Carly, Reble Emma, Clausen Marc, Rajeziesfahani Sepideh, et al. "Should I let them know I have this?": Multifaceted genetic discrimination and limited awareness of legal protections amongst individuals with hereditary cancer syndromes. Public Health Genomics. 2024;:1-21.
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The advent of forensic DNA databases: It’s time to agree on some international governance principles!
Uberoi Diya, Palmour Nicole, Joly Yann. The advent of forensic DNA databases: It’s time to agree on some international governance principles!. Forensic Science International: Genetics. 2024;72:103095. Available from: https://www.sciencedirect.com/science/article/pii/S1872497324000917
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Analyzing Discrimination Based on Genetic Information: Review, Critique and Proposal
Akash Akash, Sarker Shuvro Prosun. Analyzing Discrimination Based on Genetic Information: Review, Critique and Proposal. Lentera Hukum. 2024;11(2):157-188. Available from: https://www.researchgate.net/publication/384889296_Analysing_Discrimination_based_on_Genetic_Information
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The Key Features of a Genetic Nondiscrimination Policy A Delphi Consensus Statement
Uberoi Diya, Dalpé Gratien, Cheung Katherine, Kondrup Emma, Palmour Nicole, Arawi Thalia, et al. The Key Features of a Genetic Nondiscrimination Policy A Delphi Consensus Statement. JAMA Netw Open. 2024; Available from: https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2824110
A proposal for an inclusive working definition of genetic discrimination to promote a more coherent debate
Kaiser Beatrice, Uberoi Diya, Raven-Adams Maili C., Cheung Katherine, Bruns Andreas, Chandrasekharan Subhashini, et al. A proposal for an inclusive working definition of genetic discrimination to promote a more coherent debate. Nat Genet. 2024; Available from: https://www.nature.com/articles/s41588-024-01786-8
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The Genetic Information Nondiscrimination Act and workplace genetic testing: Knowledge and perceptions of employed adults in the United States
Willard Lindsay, Uhlmann Wendy, Prince Anya E. R., Blasco Drew, Pal Subhamoy, Roberts J. Scott, et al. The Genetic Information Nondiscrimination Act and workplace genetic testing: Knowledge and perceptions of employed adults in the United States. J Genet Couns. 2024;
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“Uninsurable because of a genetic test”: a qualitative study of consumer views about the use of genetic test results in Australian life insurance
Muller Cassandra, Gallacher Lyndon, Keogh Louise, McInerney-Leo Aideen, Boughtwood Tiffany, Gleeson Penny, et al. “Uninsurable because of a genetic test”: a qualitative study of consumer views about the use of genetic test results in Australian life insurance. Eur J Hum Genet. 2024;32(7):827-836. Available from: https://www.nature.com/articles/s41431-024-01602-1
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Australian researcher's perspectives on the Australian industry-led moratorium on genetic tests in life insurance
Yanes Tatiane, Blencoe Marisa, Howard Antonia, Tiller Jane, Wallingford Courtney, Otlowski Margaret, et al. Australian researcher's perspectives on the Australian industry-led moratorium on genetic tests in life insurance. Am J Med Genet A. 2024;194(6):e63565.
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Discrimination Based on Genetic Information in South Asia: An Exploratory Study of Constitutions and Relevant Laws
Akash, Sarker Shuvro Prosun. Discrimination Based on Genetic Information in South Asia: An Exploratory Study of Constitutions and Relevant Laws. International Journal of Legal Information. 2024;:1-14. Available from: https://www.cambridge.org/core/journals/international-journal-of-legal-information/article/discrimination-based-on-genetic-in...
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Future implications of polygenic risk scores for life insurance underwriting
Yanes Tatiane, Tiller Jane, Haining Casey M., Wallingford Courtney, Otlowski Margaret, Keogh Louise, et al. Future implications of polygenic risk scores for life insurance underwriting. npj Genom. Med.. 2024;9(1):1-6. Available from: https://www.nature.com/articles/s41525-024-00407-x
The Regulation of Health-Related Direct-to-Consumer Genetic Tests in South Africa by the Medicines and Related Substances Act
Gooden Amy, Thaldar Donrich. The Regulation of Health-Related Direct-to-Consumer Genetic Tests in South Africa by the Medicines and Related Substances Act. South African Law Journal. 2024;141(1):112-142. Available from: https://journals.co.za/doi/abs/10.47348/SALJ/v141/i1a6
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Genetic testing and actuarial science
Macdonald Angus S. Genetic testing and actuarial science. Annals of Actuarial Science. 2024;18(1):1-4. Available from: https://www.cambridge.org/core/journals/annals-of-actuarial-science/article/genetic-testing-and-actuarial-science/A7DFEEEEFD7...
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Does Ukraine need a specific regulation related to the applying of genetic information for risk assessment in insurance?
Arych Mykhailo, Shchubelka Khrystyna, Wolfsberger Walter, Oleksyk Taras K. Does Ukraine need a specific regulation related to the applying of genetic information for risk assessment in insurance?. Finance of Ukraine. 2024;(2):85-100. Available from: https://finukr.com.ua/index.php/journal/article/view/14
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Canada’s Genetic Non-Discrimination Act has only had a limited impact on the use of genetic information by life insurers
Joly Yann, Uberoi Diya. Canada’s Genetic Non-Discrimination Act has only had a limited impact on the use of genetic information by life insurers. . 2024; Available from: https://theconversation.com/canadas-genetic-non-discrimination-act-has-only-had-a-limited-impact-on-the-use-of-genetic-inform...
Parents' attitudes towards research involving genome sequencing of their healthy children: a qualitative study
Di Carlo Christina, Mighton Chloe, Clausen Marc, Joshi Esha, Casalino Selina, Kim Theresa H. M., et al. Parents' attitudes towards research involving genome sequencing of their healthy children: a qualitative study. Eur J Hum Genet. 2024;32(2):171-175.
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Should secondary pharmacogenomic variants be actively screened and reported when diagnostic genome-wide sequencing is performed in a child?
Friedman Jan M. Should secondary pharmacogenomic variants be actively screened and reported when diagnostic genome-wide sequencing is performed in a child?. Genetics in Medicine. 2024;26(2)
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P892: “Should I let them know I have this?”: Concerns and experiences of genetic discrimination amongst individuals with hereditary cancer syndromes
Gopalakrishnan Ridhi, Reble Emma, Sam Jordan, Butkowsky Carly, Clausen Marc, Rajeziesfahani Sepideh, et al. P892: “Should I let them know I have this?”: Concerns and experiences of genetic discrimination amongst individuals with hereditary cancer syndromes. Genetics in Medicine Open. 2024;2 Available from: https://www.gimopen.org/article/S2949-7744(24)00952-X/fulltext
Still using genetic data? A comparative review of Canadian life insurance application forms before and after the GNDA
Joly Yann, Fernando Amy, Kondrup Emma, Cheung Katherine, Uberoi Diya. Still using genetic data? A comparative review of Canadian life insurance application forms before and after the GNDA. Facets. 2024; Available from: https://www.facetsjournal.com/doi/full/10.1139/facets-2023-0101
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Canada's Genetic Non-Discrimination Act: False Security for Customers of Direct-to-Consumer Genetic Testing Services
Di Felice Victoria. Canada's Genetic Non-Discrimination Act: False Security for Customers of Direct-to-Consumer Genetic Testing Services. McGill Journal of Law and Health. 2024;16(1):1-36. Available from: https://heinonline.org/HOL/P?h=hein.journals/mcghealp16&i=1
In Their Own Image: Ethical Implications of the Rise of Digital Twins/Clones/Simulacra in Healthcare
Amram Benjamin, Klempner Uri, Leibler Yehuda, Greenbaum Dov. In Their Own Image: Ethical Implications of the Rise of Digital Twins/Clones/Simulacra in Healthcare. The American Journal of Bioethics. 2023;23(9):79-81. Available from: https://doi.org/10.1080/15265161.2023.2237456
Canadian Healthcare Professionals’ Views and Attitudes toward Risk-Stratified Breast Cancer Screening
Lapointe Julie, Côté Jean-Martin, Mbuya-Bienge Cynthia, Dorval Michel, Pashayan Nora, Chiquette Jocelyne, et al. Canadian Healthcare Professionals’ Views and Attitudes toward Risk-Stratified Breast Cancer Screening. Journal of Personalized Medicine. 2023;13(7):1027. Available from: https://www.mdpi.com/2075-4426/13/7/1027
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Is legislation to prevent genetic discrimination necessary in Japan? An overview of the current policies and public attitudes
Muto Kaori, Nagai Akiko, Ri Izen, Takashima Kyoko, Yoshida Sachie. Is legislation to prevent genetic discrimination necessary in Japan? An overview of the current policies and public attitudes. J Hum Genet. 2023;:1-7. Available from: https://www.nature.com/articles/s10038-023-01163-z
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Community concerns about genetic discrimination in life insurance persist in Australia: A survey of consumers offered genetic testing
Tiller Jane, Bakshi Andrew, Dowling Grace, Keogh Louise, McInerney-Leo Aideen, Barlow-Stewart Kristine, et al. Community concerns about genetic discrimination in life insurance persist in Australia: A survey of consumers offered genetic testing. Eur J Hum Genet. 2023;:1-9. Available from: https://www.nature.com/articles/s41431-023-01373-1
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Disclosing Privacy and Discrimination Protections in Informed Consent
Prince Anya. Disclosing Privacy and Discrimination Protections in Informed Consent. Health Matrix: The Journal of Law-Medicine. 2023;33(1):79. Available from: https://scholarlycommons.law.case.edu/healthmatrix/vol33/iss1/2
The Slippery Slope of Prenatal Testing for Social Traits
Canter Courtney, Foley Kathleen, Callier Shawneequa L., Meagher Karen M., Waltz Margaret, Washington Aurora, et al. The Slippery Slope of Prenatal Testing for Social Traits. Am J Bioeth. 2023;23(3):36-38.
Frozen and forgotten: What are South African fertility clinics to do with surplus cryopreserved embryos once their patients lose interest?
Thaldar Donrich W., Edgcumbe Aliki. Frozen and forgotten: What are South African fertility clinics to do with surplus cryopreserved embryos once their patients lose interest?. Developing World Bioethics. 2023;n/a(n/a) Available from: https://onlinelibrary.wiley.com/doi/abs/10.1111/dewb.12422
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Defusing the legal and ethical minefield of epigenetic applications in the military, defense, and security context
Dalpé Gratien, Huerne Katherine, Dupras Charles, Cheung Katherine, Winkler Eva, Alex Karla, et al. Defusing the legal and ethical minefield of epigenetic applications in the military, defense, and security context. Journal of Law & Bioethics. 2023;
GATTACA is still pertinent 25 years later
Greenbaum Dov, Gerstein Mark. GATTACA is still pertinent 25 years later. Nat Genet. 2022;:1-3. Available from: https://www.nature.com/articles/s41588-022-01242-5
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Genetic discrimination still casts a large shadow in 2022
Joly Yann, Dalpe Gratien. Genetic discrimination still casts a large shadow in 2022. Eur J Hum Genet. 2022;:1-3. Available from: https://www.nature.com/articles/s41431-022-01194-8
Researcher perspectives on ethics considerations in epigenetics: an international survey
Dupras Charles, Knoppers Terese, Palmour Nicole, Beauchamp Elisabeth, Liosi Stamatina, Siebert Reiner, et al. Researcher perspectives on ethics considerations in epigenetics: an international survey. Clin Epigenet. 2022;14(1):110. Available from: https://doi.org/10.1186/s13148-022-01322-7
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Health care implications of the Genetic Non-Discrimination Act: Protection for Canadians’ genetic information
Cowan James S., Kagedan Barbara Laine, Graham Gail E., Heim-Myers Bev, Bombard Yvonne. Health care implications of the Genetic Non-Discrimination Act: Protection for Canadians’ genetic information. Canadian Family Physician. 2022;68(9):643-646. Available from: https://www.cfp.ca/content/68/9/643
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Health professionals’ views and experiences of the Australian moratorium on genetic testing and life insurance: A qualitative study
Dowling Grace, Tiller Jane, McInerney-Leo Aideen, Belcher Andrea, Haining Casey, Barlow-Stewart Kristine, et al. Health professionals’ views and experiences of the Australian moratorium on genetic testing and life insurance: A qualitative study. Eur J Hum Genet. 2022;:1-7. Available from: https://www.nature.com/articles/s41431-022-01150-6
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Privacy and the Genetic Community
Leib-Neri Marisa A., Prince Anya E. R. Privacy and the Genetic Community. The American Journal of Bioethics. 2022;22(7):70-72. Available from: https://www.tandfonline.com/doi/full/10.1080/15265161.2022.2075972
The goldilocks conundrum: Disclosing discrimination risks in informed consent
Prince Anya E. R., Suter Sonia M., Uhlmann Wendy R., Scherer Aaron M. The goldilocks conundrum: Disclosing discrimination risks in informed consent. Journal of Genetic Counseling. 2022;n/a(n/a) Available from: https://onlinelibrary.wiley.com/doi/abs/10.1002/jgc4.1613
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Auditing the Editor: A Review of Key Translational Issues in Epigenetic Editing
Huerne Katherine, Palmour Nicole, Wu Angela Ruohao, Beck Stephan, Berner Alison, Siebert Reiner, et al. Auditing the Editor: A Review of Key Translational Issues in Epigenetic Editing. The CRISPR Journal. 2022; Available from: https://www.liebertpub.com/doi/10.1089/crispr.2021.0094
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Genetic Discrimination in Access to Life Insurance: Does Ukrainian Legislation Offer Sufficient Protection against the Adverse Consequences of the Genetic Revolution to Insurance Applicants?
Arych Mykhailo, Joly Yann. Genetic Discrimination in Access to Life Insurance: Does Ukrainian Legislation Offer Sufficient Protection against the Adverse Consequences of the Genetic Revolution to Insurance Applicants?. Laws. 2021;11(1):2. Available from: https://www.mdpi.com/2075-471X/11/1/2
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Navigating the ethical maze of genomics in Canada’s military
Beauvais M J S, Knoppers B M, Boscarino C. Navigating the ethical maze of genomics in Canada’s military. BMJ Mil Health. 2021;:e001954. Available from: https://militaryhealth.bmj.com/lookup/doi/10.1136/bmjmilitary-2021-001954
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Toward a Framework for Assessing Privacy Risks in Multi-Omic Research and Databases
Dupras Charles, Bunnik Eline M. Toward a Framework for Assessing Privacy Risks in Multi-Omic Research and Databases. The American Journal of Bioethics. 2021;21(12):46-64. Available from: https://doi.org/10.1080/15265161.2020.1863516
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The persistent lack of knowledge and misunderstanding of the Genetic Information Nondiscrimination Act (GINA) more than a decade after passage
Lenartz Andrea, Scherer Aaron M., Uhlmann Wendy R., Suter Sonia M., Anderson Hartley Colleen, Prince Anya E. R. The persistent lack of knowledge and misunderstanding of the Genetic Information Nondiscrimination Act (GINA) more than a decade after passage. Genetics in Medicine. 2021;23(12):2324-2334. Available from: https://www.nature.com/articles/s41436-021-01268-w
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The omics of our lives: practices and policies of direct-to-consumer epigenetic and microbiomic testing companies
Knoppers Terese, Beauchamp Elisabeth, Dewar Ken, Kimmins Sarah, Bourque Guillaume, Joly Yann, et al. The omics of our lives: practices and policies of direct-to-consumer epigenetic and microbiomic testing companies. New Genetics and Society. 2021;0(0):1-29. Available from: https://doi.org/10.1080/14636778.2021.1997576
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Genetic testing and insurance implications: Surveying the US general population about discrimination concerns and knowledge of the Genetic Information Nondiscrimination Act (GINA)
Prince Anya E. R., Uhlmann Wendy R., Suter Sonia M., Scherer Aaron M. Genetic testing and insurance implications: Surveying the US general population about discrimination concerns and knowledge of the Genetic Information Nondiscrimination Act (GINA). Risk Management and Insurance Review. 2021;n/a(n/a) Available from: https://onlinelibrary.wiley.com/doi/abs/10.1111/rmir.12195
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Responsible use of polygenic risk scores in the clinic: potential benefits, risks and gaps
Polygenic Risk Score Task Force of the International Common Disease Alliance, Adeyemo Adebowale, Balaconis Mary K., Darnes Deanna R., Fatumo Segun, Granados Moreno Palmira, et al. Responsible use of polygenic risk scores in the clinic: potential benefits, risks and gaps. Nat Med. 2021; Available from: https://www.nature.com/articles/s41591-021-01549-6
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The Genetic Discrimination Observatory: confronting novel issues in genetic discrimination
Joly Yann, Huerne Katherine, Arych Mykhailo, Bombard Yvonne, De Paor Aisling, Dove Edward S., et al. The Genetic Discrimination Observatory: confronting novel issues in genetic discrimination. Trends in Genetics. 2021;37(11):951-954. Available from: https://www.sciencedirect.com/science/article/pii/S0168952521002286
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Three decades of genetic privacy: a metaphoric journey
Knoppers Bartha Maria, Beauvais Michael J S. Three decades of genetic privacy: a metaphoric journey. Human Molecular Genetics. 2021;30(R2):R156-R160. Available from: https://academic.oup.com/hmg/article/30/R2/R156/6307333
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Genetic Testing in Insurance Implications for Non-EU Insurance Markets as a Part of the European Integration Process
Arych Mykhailo, Levon Mariia, Arych Halyna, Kulynych Yurii. Genetic Testing in Insurance Implications for Non-EU Insurance Markets as a Part of the European Integration Process. OJMNE. 2021;(36):25-52. Available from: http://neweurope.centre.ubbcluj.ro/wp-content/uploads/2021/09/2.pdf
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A step forward, but still inadequate: Australian health professionals’ views on the genetics and life insurance moratorium
Tiller Jane M., Keogh Louise A., McInerney-Leo Aideen M., Belcher Andrea, Barlow-Stewart Kristine, Boughtwood Tiffany, et al. A step forward, but still inadequate: Australian health professionals’ views on the genetics and life insurance moratorium. Journal of Medical Genetics. 2021; Available from: https://jmg.bmj.com/content/early/2021/09/20/jmedgenet-2021-107989
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Risk-Stratified Approach to Breast Cancer Screening in Canada: Women’s Knowledge of the Legislative Context and Concerns about Discrimination from Genetic and Other Predictive Health Data
Alarie Samuel, Hagan Julie, Dalpe Gratien, Faraji Sina, Mbuya-Bienge Cynthia, Nabi Hermann, et al. Risk-Stratified Approach to Breast Cancer Screening in Canada: Women’s Knowledge of the Legislative Context and Concerns about Discrimination from Genetic and Other Predictive Health Data. Journal of Personalized Medicine. 2021;11(8):726. Available from: https://www.mdpi.com/2075-4426/11/8/726
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Genetic discrimination: introducing the Asian perspective to the debate
Kim Hannah, Ho Calvin W. L., Ho Chih-Hsing, Athira P. S., Kato Kazuto, De Castro Leonardo, et al. Genetic discrimination: introducing the Asian perspective to the debate. npj Genom. Med.. 2021;6(1):1-8. Available from: https://www.nature.com/articles/s41525-021-00218-4
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Genetic discrimination in life insurance: a human rights issue
Tiller Jane, Delatycki Martin B. Genetic discrimination in life insurance: a human rights issue. Journal of Medical Ethics. 2021;47(7):484-485. Available from: https://jme.bmj.com/content/47/7/484
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Anti-selection & Genetic Testing in Insurance: An Interdisciplinary Perspective
Golinghorst Dexter, De Paor Aisling, Joly Yann, Macdonald Angus S., Otlowski Margaret, Peter Richard, et al. Anti-selection & Genetic Testing in Insurance: An Interdisciplinary Perspective. . 2021; Available from: https://www.cambridge.org/core/journals/journal-of-law-medicine-and-ethics/article/antiselection-genetic-testing-in-insurance...
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Normalising life at risk of Huntington’s disease. A qualitative study of backgrounds and coping strategies of fears of genetic discrimination
Wauters Annet, Van Hoyweghen Ine. Normalising life at risk of Huntington’s disease. A qualitative study of backgrounds and coping strategies of fears of genetic discrimination. Eur J Hum Genet. 2021;29(6):940-948. Available from: http://www.nature.com/articles/s41431-021-00822-z
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Study protocol: the Australian genetics and life insurance moratorium—monitoring the effectiveness and response (A-GLIMMER) project
Tiller Jane, McInerney-Leo Aideen, Belcher Andrea, Boughtwood Tiffany, Gleeson Penny, Delatycki Martin, et al. Study protocol: the Australian genetics and life insurance moratorium—monitoring the effectiveness and response (A-GLIMMER) project. BMC Medical Ethics. 2021;22(1):63. Available from: https://doi.org/10.1186/s12910-021-00634-2
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Erring In Law and In Fact: The Supreme Court of Canada’s Reference Re Genetic Non-Discrimination Act
Joly Yann, Dalpe Gratien, Gallois Hortense, Knoppers Bartha Maria, Turp Daniel. Erring In Law and In Fact: The Supreme Court of Canada’s Reference Re Genetic Non-Discrimination Act. Canadian Bar Review. 2021;99(1):172-192. Available from: https://cbr.cba.org/index.php/cbr/article/view/4662
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Monitoring the genetic testing and life insurance moratorium in Australia: a national research project
Tiller Jane, Winship Ingrid, Otlowski Margaret FA, Lacaze Paul A. Monitoring the genetic testing and life insurance moratorium in Australia: a national research project. Medical Journal of Australia. 2021;214(4):157. Available from: https://onlinelibrary.wiley.com/doi/10.5694/mja2.50922
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Women's Views on Multifactorial Breast Cancer Risk Assessment and Risk-Stratified Screening: A Population-Based Survey from Four Provinces in Canada
Mbuya Bienge Cynthia, Pashayan Nora, Brooks Jennifer D., Dorval Michel, Chiquette Jocelyne, Eloy Laurence, et al. Women's Views on Multifactorial Breast Cancer Risk Assessment and Risk-Stratified Screening: A Population-Based Survey from Four Provinces in Canada. J Pers Med. 2021;11(2) Available from: https://www.mdpi.com/2075-4426/11/2/95
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Can Genetic Nondiscrimination Laws Save Lives?
Rothstein Mark A. Can Genetic Nondiscrimination Laws Save Lives?. Hastings Center Report. 2021;51(1):6-7. Available from: http://doi.wiley.com/10.1002/hast.1204
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Digital Health, Artificial Intelligence and Accessibility to Health Care in Denmark
Audrey Lebret, Timo Minssen. Digital Health, Artificial Intelligence and Accessibility to Health Care in Denmark. European Human Rights Law Review. 2021;(1):39-49. Available from: https://jura.ku.dk/english/staff/research/?pure=en%2Fpublications%2Fdigital-health-artificial-intelligence-and-accessibility-...
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Genetic discrimination views in online discussion forums: Perspectives from Canadian forumites
Dalpe Gratien, Pinkesz Miriam, Oliviero Elisabeth, Tolymbek Maria, Joly Yann. Genetic discrimination views in online discussion forums: Perspectives from Canadian forumites. Journal of Genetic Counseling. 2021;00:1-16. Available from: https://onlinelibrary.wiley.com/doi/abs/10.1002/jgc4.1427
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Les enjeux québécois de la discrimination génétique : l’expérience d’un forum en ligne
Dalpe Gratien, Pinkesz Miriam, Marrocco Gabriel, Joly Yann. Les enjeux québécois de la discrimination génétique : l’expérience d’un forum en ligne. Les ateliers de l'éthique / The Ethics Forum. 2021;15(1-2):4-38. Available from: https://doi.org/10.7202/1077527ar
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The Problems with Patchwork: State Approaches to Regulating Insurer Use of Genetic Information
Anderson Jarrod, Lewis Anna, Prince Anya. The Problems with Patchwork: State Approaches to Regulating Insurer Use of Genetic Information. DePaul J. Health Care L.. 2021;22(1):1. Available from: https://via.library.depaul.edu/jhcl/vol22/iss1/1/?utm_source=via.library.depaul.edu%2Fjhcl%2Fvol22%2Fiss1%2F1&utm_medium=PDF&...
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A survey of U. S. state insurance commissioners concerning genetic testing and life insurance: Redux at 27
Golinghorst Dexter R., Prince Anya E. R. A survey of U. S. state insurance commissioners concerning genetic testing and life insurance: Redux at 27. J Genet Couns. 2020;29(6):928-935. Available from: https://pubmed.ncbi.nlm.nih.gov/31850620/
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Banning Genetic Discrimination in Life Insurance — Time to Follow Florida’s Lead
Rothstein Mark A., Brothers Kyle B. Banning Genetic Discrimination in Life Insurance — Time to Follow Florida’s Lead. N Engl J Med. 2020;383(22):2099-2101. Available from: http://www.nejm.org/doi/10.1056/NEJMp2024123
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Looking Beyond GINA: Policy Approaches to Address Genetic Discrimination
Joly Yann, Dupras Charles, Pinkesz Miriam, Tovino Stacey A., Rothstein Mark A. Looking Beyond GINA: Policy Approaches to Address Genetic Discrimination. Annu. Rev. Genom. Hum. Genet.. 2020;21(1):491-507. Available from: https://www.annualreviews.org/doi/10.1146/annurev-genom-111119-011436
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Denmark
Minssen Timo. Denmark. In: AI, Big Data and Machine Learning. 2nd edition. London: Global Legal Group Ltd; 2020. p. 113-128. Available from: https://www.acc.com/sites/default/files/resources/upload/GLI-AIML20_E-Edition.pdf
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Establishing the International Genetic Discrimination Observatory
Joly Yann, Dalpe Gratien, Dupras Charles, Bévière-Boyer Bénédicte, de Paor Aisling, Dove Edward S., et al. Establishing the International Genetic Discrimination Observatory. Nat Genet. 2020;52(5):466-468. Available from: https://www.nature.com/articles/s41588-020-0606-5
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Human rights in the postgenomic era: Challenges and opportunities arising with epigenetics
Dupras Charles, Joly Yann, Rial-Sebbag Emmanuelle. Human rights in the postgenomic era: Challenges and opportunities arising with epigenetics. Social Science Information. 2020;59(1):12-34. Available from: http://journals.sagepub.com/doi/10.1177/0539018419900139
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Genomics: data sharing needs an international code of conduct
Phillips Mark, Molnár-Gábor Fruzsina, Korbel Jan O., Thorogood Adrian, Joly Yann, Chalmers Don, et al. Genomics: data sharing needs an international code of conduct. Nature. 2020;578(7793):31-33. Available from: http://www.nature.com/articles/d41586-020-00082-9
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Genetic discrimination by Australian insurance companies: a survey of consumer experiences
Tiller Jane, Morris Susan, Rice Toni, Barter Krystal, Riaz Moeen, Keogh Louise, et al. Genetic discrimination by Australian insurance companies: a survey of consumer experiences. European Journal of Human Genetics : EJHG. 2020;28(1):108-113. Available from: https://proxy.library.mcgill.ca/login?url=https://www.proquest.com/scholarly-journals/genetic-discrimination-australian-insur...
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Proxy Discrimination in the Age of Artificial Intelligence and Big Data
Prince Anya E R, Schwarcz Daniel. Proxy Discrimination in the Age of Artificial Intelligence and Big Data. Iowa Law Review. 2020;105:62. Available from: https://scholarship.law.umn.edu/cgi/viewcontent.cgi?article=1695&context=faculty_articles
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Predictive Health Information and Employment Discrimination under the ADA and GINA
Rothstein Mark A. Predictive Health Information and Employment Discrimination under the ADA and GINA. J. Law. Med. Ethics. 2020;48(3):595-602. Available from: https://www.cambridge.org/core/product/identifier/S1073110500026772/type/journal_article
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L’utilisation des tests génétiques dans le domaine de l’assurance en droit français et européen : une affaire d’assurance et de politique publique
Byk Christian. L’utilisation des tests génétiques dans le domaine de l’assurance en droit français et européen : une affaire d’assurance et de politique publique. In: Khoury, Lara; Blackett, Adelle; Vanhonnaeker, Lukas, editors. Genetic Testing and the Governance of Risk in the Contemporary Economy: Comparative Reflections in the Insurance and Employment Law Contexts. Cham: Springer International Publishing; 2020. p. 193-220. Available from: http://link.springer.com/10.1007/978-3-030-43699-5
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Regulating the Use of Genetic Testing by Insurers and Employers in the Province of Quebec: Is the Genetic Non-Discrimination Act Really Necessary?
Joly Yann, Marrocco Gabriel. Regulating the Use of Genetic Testing by Insurers and Employers in the Province of Quebec: Is the Genetic Non-Discrimination Act Really Necessary?. In: Khoury, Lara; Blackett, Adelle; Vanhonnaeker, Lukas, editors. Genetic Testing and the Governance of Risk in the Contemporary Economy: Comparative Reflections in the Insurance and Employment Law Contexts. Cham: Springer International Publishing; 2020. p. 269-292. Available from: https://doi.org/10.1007/978-3-030-43699-5_12
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Réflexions éthiques et juridiques sur la modification génétique constitutionnelle des cellules germinales humaines
Bévière-Boyer Bénédicte. Réflexions éthiques et juridiques sur la modification génétique constitutionnelle des cellules germinales humaines. Revue générale de droit médical. 2020;(77):16. Available from: https://www.bnds.fr/revue/rgdm/rgdm-77/reflexions-ethiques-et-juridiques-sur-la-modification-genetique-constitutionnelle-des-...
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Ethical and legal challenges of artificial intelligence-driven healthcare
Gerke Sara, Minssen Timo, Cohen Glenn. Ethical and legal challenges of artificial intelligence-driven healthcare. Artificial Intelligence in Healthcare. 2020;:295-336. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7332220/
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Obtencion y Utilizacion de Datos Geneticos en la Contratacion de Seguros. La Dificil Concrecion de la Prohibicion de Discriminacion
Nicolás Pilar. Obtencion y Utilizacion de Datos Geneticos en la Contratacion de Seguros. La Dificil Concrecion de la Prohibicion de Discriminacion. Revista da Faculdade Mineira de Direito. 2019;22(43) Available from: http://periodicos.pucminas.br/index.php/Direito/article/view/21250
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The law of genetic privacy: applications, implications, and limitations
Clayton Ellen Wright, Evans Barbara J, Hazel James W, Rothstein Mark A. The law of genetic privacy: applications, implications, and limitations. Journal of Law and the Biosciences. 2019;6(1):1-36. Available from: https://doi.org/10.1093/jlb/lsz007
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Is Genetic Discrimination Back on the Radar? A Commentary on the Recent Court of Appeal Reference Decision on the Genetic Non- Discrimination Act (GNDA)
Joly Yann, Dalpe Gratien, Pinkesz Miriam. Is Genetic Discrimination Back on the Radar? A Commentary on the Recent Court of Appeal Reference Decision on the Genetic Non- Discrimination Act (GNDA). Canadian Journal of Bioethics. 2019;2(2):94-96. Available from: https://doi.org/10.7202/1064941ar
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Potential (mis)use of epigenetic age estimators by private companies and public agencies: human rights law should provide ethical guidance
Dupras Charles, Beck Stephan, Rothstein Mark A, Berner Alison, Saulnier Katie M, Pinkesz Miriam, et al. Potential (mis)use of epigenetic age estimators by private companies and public agencies: human rights law should provide ethical guidance. Environmental Epigenetics. 2019;5(3):dvz018. Available from: https://doi.org/10.1093/eep/dvz018
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Genetic testing and insurance in Australia.
Otlowski Margaret, Barlow-Stewart Kristine, Lacaze Paul, Tiller Jane. Genetic testing and insurance in Australia.. Australian journal of general practice. 2019;48(3):96-99. Available from: https://proxy.library.mcgill.ca/login?url=https://www.proquest.com/scholarly-journals/genetic-testing-insurance-australia/doc...
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Comparative perspectives: regulating insurer use of genetic information
Prince Anya E.R. Comparative perspectives: regulating insurer use of genetic information. Eur J Hum Genet. 2019;27(3):340-348. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6460564/
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In Search of Solidarity: Personalised Medicine in Denmark
Katharina O Cathaoir. In Search of Solidarity: Personalised Medicine in Denmark. Nordisk socialrättslig tidskrift. 2019;(21-22):65-95. Available from: https://jura.ku.dk/english/staff/research/?pure=en%2Fpublications%2Fin-search-of-solidarity-personalised-medicine-in-denmark(...
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Genetic testing and insurance in Australia
Otlowski Margaret, Tiller Jane, Barlow -Stewart Kristine, Lacaze Paul. Genetic testing and insurance in Australia. Australian Journal of General Practice. 2019;48(3):96-99. Available from: https://search.informit.org/doi/abs/10.3316/INFORMIT.245625531942179
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Personlig medicin - en udfordring for patienters rettigheder?
Katharina O Cathaoir. Personlig medicin - en udfordring for patienters rettigheder?. Juristen. 2019;(6):219-231. Available from: https://jura.ku.dk/english/staff/research/?pure=en%2Fpublications%2Fin-search-of-solidarity-personalised-medicine-in-denmark(...
System of Legal Regulation of Operations Related to Genome Maneuvers
Nartai Azhar, Shalkharov Yernar Sailaubekovich, International Kazakh-Turkish University after H.A.Yessevi, Bitemirov Kairat Turlybaevich, International Kazakh-Turkish University after H.A.Yessevi. System of Legal Regulation of Operations Related to Genome Maneuvers. Theoretical & Applied Science. 2018;68(12):376-378. Available from: http://www.t-science.org/arxivDOI/2018/12-68/12-68-57.html
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The Place of Acts Regarding to Genetic Engineering in The System of Legal Regulation (Legal Analysis)
Nartai Azhar, Shalkharov Yernar Sailaubekovich, International Kazakh-Turkish University after H.A.Yessevi, Bitemirov Kairat Turlybaevich, International Kazakh-Turkish University after H.A.Yessevi. The Place of Acts Regarding to Genetic Engineering in The System of Legal Regulation (Legal Analysis). Theoretical & Applied Science. 2018;68(12):373-375. Available from: http://www.t-science.org/arxivDOI/2018/12-68/12-68-56.html
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The Role of Human Genome Related Legal Study Development
Nartai Azhar, Shalkharov Yernar Sailaubekovich, International Kazakh-Turkish University after H.A.Yessevi, Bitemirov Kairat Turlybaevich, International Kazakh-Turkish University after H.A.Yessevi. The Role of Human Genome Related Legal Study Development. Theoretical & Applied Science. 2018;68(12):290-292. Available from: http://www.t-science.org/arxivDOI/2018/12-68/12-68-43.html
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Political economy, stakeholder voices, and saliency: lessons from international policies regulating insurer use of genetic information
Prince Anya E R. Political economy, stakeholder voices, and saliency: lessons from international policies regulating insurer use of genetic information. Journal of Law and the Biosciences. 2018;5(3):461-494. Available from: https://doi.org/10.1093/jlb/lsz001
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ASSAf consensus study on the ethical, legal and social implications of genetics and genomics in South Africa
Pepper Michael S., Dandara Collet, de Vries Jantina, Dhai Amaboo, Labuschaigne Melodie, Mnyongani Freddy, et al. ASSAf consensus study on the ethical, legal and social implications of genetics and genomics in South Africa. S. Afr. J. Sci. 2018;114(11/12) Available from: https://www.sajs.co.za/article/view/5822
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How are genetic test results being used by Australian life insurers?
Barlow-Stewart K., Liepins M., Doble A., Otlowski M. How are genetic test results being used by Australian life insurers?. Eur J Hum Genet. 2018;26(9):1248-1256. Available from: https://www.nature.com/articles/s41431-018-0198-z
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China: concurring regulation of cross-border genomic data sharing for statist control and individual protection
Chen Yongxi, Song Lingqiao. China: concurring regulation of cross-border genomic data sharing for statist control and individual protection. Hum Genet. 2018;137(8):605-615. Available from: http://link.springer.com/10.1007/s00439-018-1903-2
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Epigenetic Discrimination: Emerging Applications of Epigenetics Pointing to the Limitations of Policies Against Genetic Discrimination
Dupras Charles, Song Lingqiao, Saulnier Katie M., Joly Yann. Epigenetic Discrimination: Emerging Applications of Epigenetics Pointing to the Limitations of Policies Against Genetic Discrimination. Front. Genet.. 2018;9:202. Available from: https://www.frontiersin.org/article/10.3389/fgene.2018.00202/full
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The Genetic Non-Discrimination Act: critical for promoting health and science in Canada
Bombard Yvonne, Heim-Myers Bev. The Genetic Non-Discrimination Act: critical for promoting health and science in Canada. CMAJ. 2018;190(19):E579-E580. Available from: http://www.cmaj.ca/lookup/doi/10.1503/cmaj.180298
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GINA at Ten and the Future of Genetic Nondiscrimination Law
Rothstein Mark A. GINA at Ten and the Future of Genetic Nondiscrimination Law. Hastings Center Report. 2018;48(3):5-7. Available from: https://onlinelibrary.wiley.com/doi/10.1002/hast.847
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Concerns about Genetic Discrimination after Regulation: A Qualitative Study of the Situation Regarding BRCA and Huntington’s Disease in Belgium
Wauters Annet, Van Hoyweghen Ine. Concerns about Genetic Discrimination after Regulation: A Qualitative Study of the Situation Regarding BRCA and Huntington’s Disease in Belgium. Laws. 2018;7(2):17. Available from: http://www.mdpi.com/2075-471X/7/2/17
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Time to End the Use of Genetic Test Results in Life Insurance Underwriting
Rothstein Mark A. Time to End the Use of Genetic Test Results in Life Insurance Underwriting. J. Law. Med. Ethics. 2018;46(3):794-801. Available from: https://www.cambridge.org/core/product/identifier/S1073110500023007/type/journal_article
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Genetics, Insurance and Professional Practice: Survey of the Australasian Clinical Genetics Workforce
Tiller Jane, Keogh Louise, Wake Samantha, Delatycki Martin, Otlowski Margaret, Lacaze Paul. Genetics, Insurance and Professional Practice: Survey of the Australasian Clinical Genetics Workforce. Frontiers in Public Health. 2018;6 Available from: https://www.frontiersin.org/article/10.3389/fpubh.2018.00333
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The Dangers of Direct-to-Consumer Genetic Testing for Alzheimer’s Disease
Lacaze Paul, Tiller Jane, Ryan Joanne. The Dangers of Direct-to-Consumer Genetic Testing for Alzheimer’s Disease. Bioethical Inquiry. 2017;14(4):585-587. Available from: https://doi.org/10.1007/s11673-017-9817-6
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Breast Cancer Risk Estimation and Personal Insurance: A Qualitative Study Presenting Perspectives from Canadian Patients and Decision Makers
Dalpe Gratien, Ngueng Feze Ida, Salman Shahad, Joly Yann, Hagan Julie, Lévesque Emmanuelle, et al. Breast Cancer Risk Estimation and Personal Insurance: A Qualitative Study Presenting Perspectives from Canadian Patients and Decision Makers. Frontiers in Genetics. 2017;8 Available from: http://journal.frontiersin.org/article/10.3389/fgene.2017.00128/full
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Comparative Approaches to Genetic Discrimination: Chasing Shadows?
Joly Yann, Feze Ida Ngueng, Song Lingqiao, Knoppers Bartha M. Comparative Approaches to Genetic Discrimination: Chasing Shadows?. Trends in Genetics. 2017;33(5):299-302. Available from: https://linkinghub.elsevier.com/retrieve/pii/S0168952517300331
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DNA Testing for Family Reunification in Canada: Points to Consider
Joly Yann, Salman Shahad, Ngueng Feze Ida, Granados Moreno Palmira, Stanton-Jean Michèle, Lacey Jacqueline, et al. DNA Testing for Family Reunification in Canada: Points to Consider. Int. Migration & Integration. 2017;18(2):391-404. Available from: http://link.springer.com/10.1007/s12134-016-0496-7
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Genetic Discrimination: A Case for a European Legislative Response?
de Paor Aisling. Genetic Discrimination: A Case for a European Legislative Response?. Eur J Health Law. 2017;24(2):135-159. Available from: https://brill.com/view/journals/ejhl/24/2/article-p135_3.xml
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Normative Approaches to Address Genetic Discrimination: Placebo or Panacea?
Joly Yann, Ngueng Feze Ida, Song Lingqiao, Knoppers Bartha Maria. Normative Approaches to Address Genetic Discrimination: Placebo or Panacea?. . 2017; Available from: https://papers.ssrn.com/abstract=2911199
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Insurance and genetic tests
Byk Christian. Insurance and genetic tests. Revue générale du droit des assurances. 2017;n° 114e7(2):97. Available from: https://www.labase-lextenso.fr/revue-generale-du-droit-des-assurances/RGA114e7
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Ancestry Testing and the Practice of Genetic Counseling
Kirkpatrick Brianne E., Rashkin Misha D. Ancestry Testing and the Practice of Genetic Counseling. J Genet Counsel. 2017;26(1):6-20. Available from: http://doi.wiley.com/10.1007/s10897-016-0014-2
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Exporting DNA – striking a balance between preventing exploitation and promoting innovation
Pepper M S. Exporting DNA – striking a balance between preventing exploitation and promoting innovation. S Afr Med J. 2017;107(2):106. Available from: http://www.samj.org.za/index.php/samj/article/view/11797
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Genetics and Insurance in Australia: Concerns around a Self-Regulated Industry
Newson Ainsley J., Tiller Jane, Keogh Louise A., Otlowski Margaret, Lacaze Paul. Genetics and Insurance in Australia: Concerns around a Self-Regulated Industry. PHG. 2017;20(4):247-256. Available from: https://www.karger.com/Article/FullText/481450
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Insurance Risk Classification in an Era of Genomics: Is a Rational Discrimination Policy Rational?
Prince Anya E.R. Insurance Risk Classification in an Era of Genomics: Is a Rational Discrimination Policy Rational?. Neb Law Rev. 2017;96(3):624-687. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6934377/
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Should Australia Ban the Use of Genetic Test Results in Life Insurance?
Tiller Jane, Otlowski Margaret, Lacaze Paul. Should Australia Ban the Use of Genetic Test Results in Life Insurance?. Frontiers in Public Health. 2017;5 Available from: https://www.frontiersin.org/article/10.3389/fpubh.2017.00330
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Genetic Discrimination in Quebec: A flexible and proactive approach to address a complex social issue
Joly Y., Dupras C., Ngueng Feze I., Song L. Genetic Discrimination in Quebec: A flexible and proactive approach to address a complex social issue. 2017. Available from: https://www.genomequebec.com/DATA/PUBLICATION/32_en~v~Genetic_Discrimination_in_Quebec_-_Policy_Brief.pdf
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Epigenetics ELSI: Darker Than You Think?
Joly Yann, So Derek, Saulnier Katie, Dyke Stephanie O. M. Epigenetics ELSI: Darker Than You Think?. Trends Genet. 2016;32(10):591-592. Available from: https://www.cell.com/trends/genetics/fulltext/S0168-9525(16)30069-5
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Global trends on fears and concerns of genetic discrimination: a systematic literature review
Wauters Annet, Van Hoyweghen Ine. Global trends on fears and concerns of genetic discrimination: a systematic literature review. J Hum Genet. 2016;61(4):275-282. Available from: https://www.nature.com/articles/jhg2015151
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Implications of direct-to-consumer whole-exome sequencing in South Africa
Lombard Zané, Baine Fiona, Krause Amanda, Lochan Anneline, Macualay Shelley, Spencer Careni, et al. Implications of direct-to-consumer whole-exome sequencing in South Africa. S Afr Med J. 2016;106(2):139. Available from: http://www.samj.org.za/index.php/samj/article/view/10534
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How Genetics Might Affect Real Property Rights
Rothstein Mark A., Rothstein Laura. How Genetics Might Affect Real Property Rights. J. Law. Med. Ethics. 2016;44(1):216-221. Available from: https://www.cambridge.org/core/product/identifier/S1073110500020866/type/journal_article
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Limiting Occupational Medical Evaluations under the Americans with Disabilities Act and the Genetic Information Nondiscrimination Act
Rothstein Mark A., Roberts Jessica, Guidotti Tee L. Limiting Occupational Medical Evaluations under the Americans with Disabilities Act and the Genetic Information Nondiscrimination Act. Am. J. Law. Med.. 2015;41(4):523-567. Available from: https://www.cambridge.org/core/product/identifier/S009885880000349X/type/journal_article
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Innovations of the Americans With Disabilities Act: Confronting Disability Discrimination in Employment
Rothstein Mark A. Innovations of the Americans With Disabilities Act: Confronting Disability Discrimination in Employment. JAMA. 2015;313(22):2221-2222. Available from: https://doi.org/10.1001/jama.2015.3417
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Perspective of Theoretical Consideration in the Text of the Article "Cloning of the Person" of the New Criminal Code of the Republic of Kazakhstan from the Position of the International and Foreign Experience of Countries of Western Europe in particular the United Kingdom: Comparative Analysis
Shalkharov Yernar Sailaubekovich, Nakipov Balgabay Isakulovich, International Kazakh Turkish University by name of K.A.Yessevi, Batyrbaev Nurlan Muhtarovich, International Kazakh Turkish University by name of K.A.Yessevi, Urazbaev Kuanyshbek Baimbetovich, et al. Perspective of Theoretical Consideration in the Text of the Article "Cloning of the Person" of the New Criminal Code of the Republic of Kazakhstan from the Position of the International and Foreign Experience of Countries of Western Europe in particular the United Kingdom: Comparative Analysis. Theoretical & Applied Science. 2015;23(03):138-145. Available from: http://www.t-science.org/arxivDOI/2015/03(23)/03(23)_24.html
Regulating Genetic Discrimination in the European Union: Pushing the EU into Unchartered Territory or Ushering in a New Genomic Era?
de Paor Aisling, Ferri Delia. Regulating Genetic Discrimination in the European Union: Pushing the EU into Unchartered Territory or Ushering in a New Genomic Era?. European Journal of Law Reform. 2015;17(1):14-32. Available from: http://www.elevenjournals.com/doi/10.5553/EJLR/138723702015017001002
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Problems of Consumer Protection Legislation in the Sphere of Medical Education System as a Course to Achieve Goal of Correct Connection Between Doctor and Patient in Kazakhstan, Central Asia (Discripting Approach)
Akmadov Shamuhamet Nurmuhamedovich, Batyrbaev Nurlan Muhtarovich, International Kazakh-Turkish University by name of H.A.Yessevy Kazakhstan, Shalkharov Yernar Sailaubekovich, International Kazakh-Turkish University by name of H.A.Yessevi. Kazakhstan. Problems of Consumer Protection Legislation in the Sphere of Medical Education System as a Course to Achieve Goal of Correct Connection Between Doctor and Patient in Kazakhstan, Central Asia (Discripting Approach). Theoretical & Applied Science. 2015;21(01):126-128. Available from: http://www.t-science.org/arxivDOI/2015/01(21)/01(21)_21.html
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Applied Aspects of Application of Insurance of Professional Responsibility of Doctor in Medical Conflicts and Affecting Mechanisms on Area of Prosecution in Kazakhstan Republic, Central Asia: Description Approach
Dusipov Erkin Shajaevich, Batyrbaev Nurlan Muhtarovich, International Kazakh-Turkish University by name of H.A.Yessevy Kazakhstan, Uderbaev Nurlybek Nurlanovich, Kazakh Medical University of Continuing Education Kazakhstan, Shalkharov Yernar Sailaubekovich, et al. Applied Aspects of Application of Insurance of Professional Responsibility of Doctor in Medical Conflicts and Affecting Mechanisms on Area of Prosecution in Kazakhstan Republic, Central Asia: Description Approach. Theoretical & Applied Science. 2015;21(01):89-93. Available from: http://www.t-science.org/arxivDOI/2015/01(21)/01(21)_16.html
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Ethical, legal and social implications of incorporating personalized medicine into healthcare
Brothers Kyle B, Rothstein Mark A. Ethical, legal and social implications of incorporating personalized medicine into healthcare. Personalized Medicine. 2015;12(1):43-51. Available from: https://www.futuremedicine.com/doi/abs/10.2217/pme.14.65
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Genetics and Personal Insurance: the Perspectives of Canadian Cancer Genetic Counselors
Lane Michelle, Ngueng Feze Ida, Joly Yann. Genetics and Personal Insurance: the Perspectives of Canadian Cancer Genetic Counselors. Journal of Genetic Counseling. 2015;24(6):1022-1036. Available from: https://onlinelibrary.wiley.com/doi/abs/10.1007/s10897-015-9841-9
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Genetic discrimination: transatlantic perspectives on the case for a European-level legal response
Genetic discrimination: transatlantic perspectives on the case for a European-level legal response. Abingdon, Oxon ; New York, NY: Routledge; 2015. Available from: https://www.routledge.com/Genetic-Discrimination-Transatlantic-Perspectives-on-the-Case-for-a-European/Quinn-Paor-Blanck/p/bo...
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Recommendations for Centres of Expertise in Rare Anaemias. The ENERCA White Book
Vives Corrons Joan-Lluis, del Mar Mañú Pereira María, Romeo-Casabona Carlos, Nicolás Pilar, Gulbis Béatrice, Eleftheriou Androulla, et al. Recommendations for Centres of Expertise in Rare Anaemias. The ENERCA White Book. Thalassemia Reports. 2014;4(3):86-90. Available from: https://www.mdpi.com/2039-4365/4/3/4878
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Genetic information, non-discrimination, and privacy protections in genetic counseling practice
Prince Anya E. R., Roche Myra I. Genetic information, non-discrimination, and privacy protections in genetic counseling practice. J Genet Couns. 2014;23(6):891-902. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4233176/
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The Genetic Information Nondiscrimination Act (GINA) of 2008
Prince Anya E.R., Watersone M. The Genetic Information Nondiscrimination Act (GINA) of 2008. In: Quinn, Gerard; de Paor, Aisling; Blanck, Peter, editors. Genetic Discrimination: Transatlantic Perspectives on the Case for a European-level Legal Response. 1st. London: Routledge; 2014. p. 300. Available from: https://www.tandfonline.com/doi/full/10.1080/09687599.2015.1075951#:~:text=non%2Ddiscrimination%20regulations.-,Genetic%20Dis...
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Genetic discrimination and insurance in Canada: Where are we now?
Nicholls Stuart, Joly Yann, Moher Ester, Little Julian. Genetic discrimination and insurance in Canada: Where are we now?. On The Risk. 2014;30:46-52. Available from: https://www.researchgate.net/publication/262138157_Genetic_discrimination_and_insurance_in_Canada_Where_are_we_now
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Can’t Always Get What you Want? Try an Indirect Route you Just Might Get What you Need: A Study on Access to Genetic Data by Canadian Life Insurers
Feze Ida, Joly Yann. Can’t Always Get What you Want? Try an Indirect Route you Just Might Get What you Need: A Study on Access to Genetic Data by Canadian Life Insurers. CPPM. 2014;12(1):56-64. Available from: http://www.eurekaselect.com/openurl/content.php?genre=article&issn=1875-6921&volume=12&issue=1&spage=56
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Life insurance: genomic stratification and risk classification
Joly Yann, Burton Hilary, Knoppers Bartha Maria, Feze Ida Ngueng, Dent Tom, Pashayan Nora, et al. Life insurance: genomic stratification and risk classification. Eur J Hum Genet. 2014;22(5):575-579. Available from: http://www.nature.com/articles/ejhg2013228
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Streitkultur and the governance of genetic testing and insurance in Germany
Lander Jonas, Van Hoyweghen Ine. Streitkultur and the governance of genetic testing and insurance in Germany. New Genetics and Society. 2014;33(1):42-59. Available from: https://www.tandfonline.com/doi/full/10.1080/14636778.2013.873336
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Genetic discrimination and life insurance: a systematic review of the evidence
Joly Yann, Ngueng Feze Ida, Simard Jacques. Genetic discrimination and life insurance: a systematic review of the evidence. BMC Med. 2013;11(1):25. Available from: http://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-11-25
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Genetic Discrimination in Employment Is Indefensible
Rothstein Mark A. Genetic Discrimination in Employment Is Indefensible. Hastings Center Report. 2013;43(6):3-4. Available from: https://onlinelibrary.wiley.com/doi/10.1002/hast.219
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Ethical, legal, and social implications of incorporating genomic information into electronic health records
Hazin Ribhi, Brothers Kyle B., Malin Bradley A., Koenig Barbara A., Sanderson Saskia C., Rothstein Mark A., et al. Ethical, legal, and social implications of incorporating genomic information into electronic health records. Genet Med. 2013;15(10):810-816. Available from: https://www.nature.com/articles/gim2013117
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Life insurance and genetic test results: a mutation carrier's fight to achieve full cover
Keogh Louise A., Otlowski Margaret F. A. Life insurance and genetic test results: a mutation carrier's fight to achieve full cover. Med. J. Aust.. 2013;199(5) Available from: https://www.mja.com.au/journal/2013/199/5/life-insurance-and-genetic-test-results-mutation-carriers-fight-achieve-full
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Harm, hype and evidence: ELSI research and policy guidance
Caulfield Timothy, Chandrasekharan Subhashini, Joly Yann, Cook-Deegan Robert. Harm, hype and evidence: ELSI research and policy guidance. Genome Medicine. 2013;5(3):21. Available from: https://doi.org/10.1186/gm425
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Personalized medicine and access to health care: potential for inequitable access?
McClellan Kelly A, Avard Denise, Simard Jacques, Knoppers Bartha M. Personalized medicine and access to health care: potential for inequitable access?. Eur J Hum Genet. 2013;21(2):143-147. Available from: http://www.nature.com/articles/ejhg2012149
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Comprehensive Protection of Genetic Information: One Size Privacy or Property Models May Not Fit All
Prince Anya. Comprehensive Protection of Genetic Information: One Size Privacy or Property Models May Not Fit All. Brooklyn Law Review. 2013;79(1) Available from: https://brooklynworks.brooklaw.edu/blr/vol79/iss1/4
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Genetic privacy: an evaluation of the ethical and legal landscape
Genetic privacy: an evaluation of the ethical and legal landscape. London: Imperial College Press; 2013. Available from: https://www.worldscientific.com/worldscibooks/10.1142/p906
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Your genes in insurance: from genetic discrimination to genomic solidarity
Van Hoyweghen Ine, Rebert Lisa. Your genes in insurance: from genetic discrimination to genomic solidarity. Personalized Medicine. 2012;9(8):871-877. Available from: https://www.futuremedicine.com/doi/10.2217/pme.12.96
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Unravelling fears of genetic discrimination: an exploratory study of Dutch HCM families in an era of genetic non-discrimination acts
Geelen Els, Horstman Klasien, Marcelis Carlo LM, Doevendans Pieter A, Van Hoyweghen Ine. Unravelling fears of genetic discrimination: an exploratory study of Dutch HCM families in an era of genetic non-discrimination acts. Eur J Hum Genet. 2012;20(10):1018-1023. Available from: http://www.nature.com/articles/ejhg201253
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Beyond the patient: The broader impact of genetic discrimination among individuals at risk of Huntington disease
Bombard Yvonne, Palin JoAnne, Friedman Jan M., Veenstra Gerry, Creighton Susan, Bottorff Joan L., et al. Beyond the patient: The broader impact of genetic discrimination among individuals at risk of Huntington disease. Am. J. Med. Genet.. 2012;159B(2):217-226. Available from: https://onlinelibrary.wiley.com/doi/10.1002/ajmg.b.32016
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Genetic discrimination: international perspectives
Otlowski M., Taylor S., Bombard Y. Genetic discrimination: international perspectives. Annu Rev Genomics Hum Genet. 2012;13:433-454. Available from: https://www.annualreviews.org/doi/abs/10.1146/annurev-genom-090711-163800
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When does an illness begin: genetic discrimination and disease manifestation
Prince Anya E. R., Berkman Benjamin E. When does an illness begin: genetic discrimination and disease manifestation. J Law Med Ethics. 2012;40(3):655-664. Available from: https://journals.sagepub.com/doi/abs/10.1111/j.1748-720X.2012.00696.x
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Factors associated with experiences of genetic discrimination among individuals at risk for huntington disease
Bombard Yvonne, Palin JoAnne, Friedman Jan M., Veenstra Gerry, Creighton Susan, Paulsen Jane S., et al. Factors associated with experiences of genetic discrimination among individuals at risk for huntington disease. Am. J. Med. Genet.. 2011;156(1):19-27. Available from: https://onlinelibrary.wiley.com/doi/10.1002/ajmg.b.31130
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Genetic discrimination in private insurance: global perspectives
Joly Yann, Braker Maria, Le Huynh Michael. Genetic discrimination in private insurance: global perspectives. New Genetics and Society. 2010;29(4):351-368. Available from: https://www.tandfonline.com/doi/full/10.1080/14636778.2010.528189
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Taming the wild life of genes by law? Genes reconfiguring solidarity in private insurance
Van Hoyweghen Ine. Taming the wild life of genes by law? Genes reconfiguring solidarity in private insurance. New Genetics and Society. 2010;29(4):431-455. Available from: https://www.tandfonline.com/doi/full/10.1080/14636778.2010.528190
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Practices and Attitudes of Australian Employers in Relation to the Use of Genetic Information: Report on a National Study
Otlowski Margaret, Stranger Mark, Taylor Sandra, Barlow-Stewart Kristine, Treloar Susan. Practices and Attitudes of Australian Employers in Relation to the Use of Genetic Information: Report on a National Study. Comparative Labor Law & Policy Journal. 2010;31(4):637-691. Available from: http://heinonline.org/hol-cgi-bin/get_pdf.cgi?handle=hein.journals/cllpj31§ion=40
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Perception, experience, and response to genetic discrimination in Huntington disease: The international RESPOND-HD study
Erwin Cheryl, Williams Janet K., Juhl Andrew R., Mengeling Michelle, Mills James A., Bombard Yvonne, et al. Perception, experience, and response to genetic discrimination in Huntington disease: The international RESPOND-HD study. Am. J. Med. Genet.. 2010;9999B:n/a-n/a. Available from: https://onlinelibrary.wiley.com/doi/10.1002/ajmg.b.31079
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In their own words: Reports of stigma and genetic discrimination by people at risk for Huntington disease in the International RESPOND-HD study
Williams Janet K., Erwin Cheryl, Juhl Andrew R., Mengeling Michelle, Bombard Yvonne, Hayden Michael R., et al. In their own words: Reports of stigma and genetic discrimination by people at risk for Huntington disease in the International RESPOND-HD study. Am. J. Med. Genet.. 2010;9999B:n/a-n/a. Available from: https://onlinelibrary.wiley.com/doi/10.1002/ajmg.b.31080
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Gina's Beauty is Only Skin Deep
Rothstein Mark A. Gina's Beauty is Only Skin Deep. Gene Watch. 2009;22(2):9-12. Available from: https://papers.ssrn.com/abstract=1519975
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Ethical implications of epigenetics research
Rothstein Mark A., Cai Yu, Marchant Gary E. Ethical implications of epigenetics research. Nat Rev Genet. 2009;10(4):224-224. Available from: https://www.nature.com/articles/nrg2562
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Verification of consumers' experiences and perceptions of genetic discrimination and its impact on utilization of genetic testing.
Barlow-Stewart Kristine, Taylor Sandra D, Treloar Susan A, Stranger Mark, Otlowski Margaret. Verification of consumers' experiences and perceptions of genetic discrimination and its impact on utilization of genetic testing.. Genetics in medicine : official journal of the American College of Medical Genetics. 2009;11(3):193-201. Available from: https://www.nature.com/articles/gim200928
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The Ghost in our Genes: Legal and Ethical Implications of Epigenetics
Rothstein Mark A., Cai Yu, Marchant Gary E. The Ghost in our Genes: Legal and Ethical Implications of Epigenetics. Health Matrix Clevel. 2009;19(1):1-62. Available from: https://asu.pure.elsevier.com/en/publications/the-ghost-in-our-genes-legal-and-ethical-implications-of-epigenet
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Keeping Your Genes Private
Rothstein Mark A. Keeping Your Genes Private. Sci Am. 2008;299(3):64-69. Available from: https://www.scientificamerican.com/article/keeping-your-genes-private
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Putting the Genetic Information Nondiscrimination Act in context
Rothstein Mark A. Putting the Genetic Information Nondiscrimination Act in context. Genetics in Medicine. 2008;10(9):655-656. Available from: https://linkinghub.elsevier.com/retrieve/pii/S1098360021030975
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European Practices of Genetic Information and Insurance: Lessons for the Genetic Information Nondiscrimination Act
Van Hoyweghen Ine, Horstman Klasien. European Practices of Genetic Information and Insurance: Lessons for the Genetic Information Nondiscrimination Act. JAMA. 2008;300(3):326. Available from: http://jama.jamanetwork.com/article.aspx?doi=10.1001/jama.2008.62
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Confidentiality, privacy, and security of genetic and genomic test information in electronic health records: points to consider
McGuire Amy L., Fisher Rebecca, Cusenza Paul, Hudson Kathy, Rothstein Mark A., McGraw Deven, et al. Confidentiality, privacy, and security of genetic and genomic test information in electronic health records: points to consider. Genet Med. 2008;10(7):495-499. Available from: https://www.nature.com/articles/gim200876
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Investigating genetic discrimination in Australia: a large-scale survey of clinical genetics clients
Taylor S., Treloar S., Barlow-Stewart K., Stranger M., Otlowski M. Investigating genetic discrimination in Australia: a large-scale survey of clinical genetics clients. Clin Genet. 2008;74(1):20-30. Available from: https://onlinelibrary.wiley.com/doi/10.1111/j.1399-0004.2008.01016.x
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Perceptions of discrimination among persons who have undergone predictive testing for Huntington's disease
Penziner Elizabeth, Williams Janet K., Erwin Cheryl, Bombard Yvonne, Wallis Anne, Beglinger Leigh J., et al. Perceptions of discrimination among persons who have undergone predictive testing for Huntington's disease. Am. J. Med. Genet.. 2008;147B(3):320-325. Available from: https://onlinelibrary.wiley.com/doi/10.1002/ajmg.b.30600
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Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease
Bombard Yvonne, Penziner Elizabeth, Suchowersky Oksana, Guttman Mark, Paulsen Jane S, Bottorff Joan L, et al. Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease. Eur J Hum Genet. 2008;16(3):279-289. Available from: http://www.nature.com/articles/5201937
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GINA, the ADA, and Genetic Discrimination in Employment
Rothstein Mark A. GINA, the ADA, and Genetic Discrimination in Employment. J Law Med Ethics. 2008;36(4):837-840. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3035561/
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Currents in Contemporary Ethics: Is GINA Worth the Wait?
Rothstein Mark A. Currents in Contemporary Ethics: Is GINA Worth the Wait?. Journal of Law, Medicine & Ethics. 2008;36(1):174-178. Available from: https://www.cambridge.org/core/journals/journal-of-law-medicine-and-ethics/article/currents-in-contemporary-ethics/AA8B630E51...
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The Use of Legal Remedies in Australia for Pursuing Allegations of Genetic Discrimination: Findings of an Empirical Study
Otlowski Margaret, Taylor Sandra, Barlowstewart Kristine, Stranger Mark, Treloar Susan. The Use of Legal Remedies in Australia for Pursuing Allegations of Genetic Discrimination: Findings of an Empirical Study. International Journal of Discrimination and the Law. 2007;9(1):3-35. Available from: https://doi.org/10.1177/135822910700900102
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Genetic ‘Risk Carriers’ and Lifestyle ‘Risk Takers’. Which Risks Deserve our Legal Protection in Insurance?
Van Hoyweghen Ine, Horstman Klasien, Schepers Rita. Genetic ‘Risk Carriers’ and Lifestyle ‘Risk Takers’. Which Risks Deserve our Legal Protection in Insurance?. Health Care Anal. 2007;15(3):179-193. Available from: https://link.springer.com/10.1007/s10728-006-0041-5
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Investigating genetic discrimination in the Australian life insurance sector: the use of genetic test results in underwriting, 1999-2003.
Otlowski Margaret, Barlow-Stewart Kristine, Taylor Sandra, Stranger Mark, Treloar Susan. Investigating genetic discrimination in the Australian life insurance sector: the use of genetic test results in underwriting, 1999-2003.. Journal of law and medicine. 2007;14(3):367-396. Available from: https://proxy.library.mcgill.ca/login?url=https://www.proquest.com/scholarly-journals/investigating-genetic-discrimination-au...
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Investigating Genetic Discrimination in Australia: Perceptions and Experiences of Clinical Genetics Service Clients regarding Coercion to Test, Insurance and Employment
Taylor Sandra, Treloar Susan, Barlow-Stewart Kristine, Otlowski Margaret, Stranger Mark. Investigating Genetic Discrimination in Australia: Perceptions and Experiences of Clinical Genetics Service Clients regarding Coercion to Test, Insurance and Employment. Australian Journal of Emerging Technologies and Society. 2007;5(2):63-83. Available from: https://espace.library.uq.edu.au/view/UQ:134802
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Consumer Experiences and Predictive Genetic Testing
Otlowski M, Skene L. Consumer Experiences and Predictive Genetic Testing. In: Stranger, M, editor. Human Biotechnology and Public Trust: Trends, Perceptions and Regulation. Centre for Law and Genetics; 2007. Available from: https://eprints.utas.edu.au/5980/
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‘Genetic Privacy, Discrimination and Insurance’
Otlowski Margaret. ‘Genetic Privacy, Discrimination and Insurance’. In: Disputes and Dilemmas in Health Law. Federation Press; 2006. Available from: https://books.google.ca/books/about/Disputes_and_Dilemmas_in_Health_Law.html?id=61JVEXzkcygC&redir_esc=y
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The Expanding Use of DNA in Law Enforcement: What Role for Privacy?
Rothstein Mark A., Talbott Meghan K. The Expanding Use of DNA in Law Enforcement: What Role for Privacy?. Journal of Law, Medicine & Ethics. 2006;34(2):153-164. Available from: https://www.cambridge.org/core/journals/journal-of-law-medicine-and-ethics/article/abs/expanding-use-of-dna-in-law-enforcemen...
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Use of Genetic Test Information in Life Insurance: An Evaluation of Different Regulatory Models
Otlowski Margaret. Use of Genetic Test Information in Life Insurance: An Evaluation of Different Regulatory Models. Journal of International Biotechnology Law. 2005;2(3):99-104. Available from: https://www.degruyter.com/document/doi/10.1515/jibl.2005.2.3.99/html
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Genetic Discrimination By Insurers As A Result Of Genetic Research And Testing: A Comparison Of National Policies
Freishtat R. J., Joly Y., Avard D., Ellenberg M., Knoppers B. M. Genetic Discrimination By Insurers As A Result Of Genetic Research And Testing: A Comparison Of National Policies. J Investig Med. 2005;53(2):S396.2-S396. Available from: https://jim.bmj.com/lookup/doi/10.2310/6650.2005.00205.52
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Knowing Your Genes
Barlow-Stewart S., Taylor S., Otlowski M. F. A. Knowing Your Genes. In: Australian Social Attitudes: The First Report. University of New South Wales Press; 2005. p. 204-219. Available from: http://ecite.utas.edu.au/37733
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Exploring the concept of genetic discrimination.
Otlowski Margaret. Exploring the concept of genetic discrimination.. Journal of bioethical inquiry. 2005;2(3):165-176. Available from: https://link.springer.com/article/10.1007/BF02448597
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Investigating genetic discrimination in Australia: opportunities and challenges in the early stages.
Taylor Sandra D, Otlowski Margaret F, Barlow-Stewart Kristine K, Treloar Susan A, Stranger Mark, Chenoweth Kellie. Investigating genetic discrimination in Australia: opportunities and challenges in the early stages.. New genetics and society. 2004;23(2):225-239. Available from: https://www.tandfonline.com/doi/abs/10.1080/1463677042000237053
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An exploration of the legal and socio-ethical implications of predictive genetic testing of children.
Otlowski Margaret. An exploration of the legal and socio-ethical implications of predictive genetic testing of children.. Australian journal of family law. 2004;18(2):147-169. Available from: https://pubmed.ncbi.nlm.nih.gov/17058338/
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Physicians, genetics and life insurance
Knoppers Bartha M., Joly Yann. Physicians, genetics and life insurance. CMAJ. 2004;170(9):1421-1423. Available from: https://www.cmaj.ca/content/170/9/1421
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Genetics and Life Insurance in Canada: Points to Consider
Knoppers Bartha Maria, Lemmens Trudo, Joly Yann, Godard Béatrice, Avard Denise, Clark Teren, et al. Genetics and Life Insurance in Canada: Points to Consider. CMAJ : Canadian Medical Association Journal. 2004;170(9) Available from: https://papyrus.bib.umontreal.ca/xmlui/handle/1866/76
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Genetics and life insurance: medical underwriting and social policy
Genetics and life insurance: medical underwriting and social policy. Cambridge, Mass: MIT Press; 2004. (Basic bioethics). Available from: https://mitpress.mit.edu/books/genetics-and-life-insurance
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Methodological considerations in the study of genetic discrimination.
Treloar Susan, Taylor Sandra, Otlowski Margaret, Barlow-Stewart Kristine, Stranger Mark, Chenoweth Kellie. Methodological considerations in the study of genetic discrimination.. Community genetics. 2004;7(4):161-168. Available from: https://www.karger.com/Article/Fulltext/82254
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Genetic information and life insurance: a ‘real’ risk?
Joly Yann, Knoppers Bartha M, Godard Béatrice. Genetic information and life insurance: a ‘real’ risk?. Eur J Hum Genet. 2003;11(8):561-564. Available from: http://www.nature.com/articles/5200998
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Genetic discrimination: Too few data
Otlowski Margaret F., Taylor Sandra D., Barlow-Stewart Kristine K. Genetic discrimination: Too few data. Eur J Hum Genet. 2003;11(1):1-2. Available from: https://www.nature.com/articles/5200910
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Genetic discrimination: meeting the challenges of an emerging issue.
Otlowski Margaret. Genetic discrimination: meeting the challenges of an emerging issue.. The University of New South Wales law journal. 2003;26(3):764-769. Available from: https://www.unswlawjournal.unsw.edu.au/article/genetic-discrimination-meeting-the-challenges-of-an-emerging-issue/
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Major study commencing into genetic discrimination in Australia.
Otlowski Margaret F, Taylor Sandra D, Barlow-Stewart Kristine K. Major study commencing into genetic discrimination in Australia.. Journal of law and medicine. 2002;10(1):41-48. Available from: https://europepmc.org/article/med/12242882
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Genetic Testing and Insurance: The Case for Regulation
Otlowski Margaret. Genetic Testing and Insurance: The Case for Regulation. Agenda. 2002;9(4):335-354. Available from: https://www.jstor.org/stable/43199221
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Australian empirical study into genetic discrimination.
Otlowski Margaret F, Taylor Sandra D, Barlow-Stewart Kristine K. Australian empirical study into genetic discrimination.. Genetics in medicine : official journal of the American College of Medical Genetics. 2002;4(5):392-395. Available from: https://www.nature.com/articles/gim200258
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Employers' use of genetic test information: is there a need for regulation
Otlowski Margaret. Employers' use of genetic test information: is there a need for regulation. Journal of Law and. 2002;8:1-39. Available from: http://ecite.utas.edu.au/24578
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What is genetic discrimination, and when and how can it be prevented?
Rothstein Mark A., Anderlik Mary R. What is genetic discrimination, and when and how can it be prevented?. Genetics in Medicine. 2001;3(5):354-358. Available from: https://www.gimjournal.org/article/S1098-3600(21)02803-3/fulltext
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Implications of genetic testing for Australian insurance law and practice
Otlowski Margaret. Implications of genetic testing for Australian insurance law and practice. Hobart, Tas: School of Law, University of Tasmania ; Faculty of Law, University of Melbourne; 2001. (Occasional paper / Centre for Law and Genetics, no. 1). Available from: https://catalogue.nla.gov.au/Record/3424850
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Privacy and Confidentiality of Genetic Information: What Rules for the New Science?
Anderlik Mary R., Rothstein Mark A. Privacy and Confidentiality of Genetic Information: What Rules for the New Science?. Annual Review of Genomics and Human Genetics. 2001;2(1):401-433. Available from: https://doi.org/10.1146/annurev.genom.2.1.401
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Avoiding Genetic Discrimination in Insurance: An Exploration of the Legality and Ethics of Precautionary Measures in Anticipation of Unfavourable Test Outcomes
Otlowski Margaret. Avoiding Genetic Discrimination in Insurance: An Exploration of the Legality and Ethics of Precautionary Measures in Anticipation of Unfavourable Test Outcomes. Monash Bioethics Review. 2001;20(1):24–32. Available from: https://philpapers.org/rec/OTLAGD
Resolving the Conundrum: Should Insurers be Entitled to Access Genetic Test Information?
Margaret Otlowski. Resolving the Conundrum: Should Insurers be Entitled to Access Genetic Test Information?. Insurance Law Journal. 2000;11:193-215.
Genetic Privacy and Confidentiality: Why They are So Hard to Protect
Rothstein Mark A. Genetic Privacy and Confidentiality: Why They are So Hard to Protect. J. Law. Med. Ethics. 1998;26(3):198-204. Available from: https://www.cambridge.org/core/product/identifier/S107311050001305X/type/journal_article
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Genetic secrets: protecting privacy and confidentiality in the genetic era
Genetic secrets: protecting privacy and confidentiality in the genetic era. New Haven: Yale University Press; 1997. Available from: https://yalebooks.yale.edu/book/9780300080636/genetic-secrets
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Genetic discrimination in insurance and employment based on personalized risk stratification for breast cancer screening
Reveiz Manuela, Bouhouita-Guermech Sarah, Blackmore Kristina, Chiquette Jocelyne, Demers Éric, Dorval Michel, et al. Genetic discrimination in insurance and employment based on personalized risk stratification for breast cancer screening. Frontiers in Genetics. 2025;16 Available from: https://www.frontiersin.org/journals/genetics/articles/10.3389/fgene.2025.1481863/full
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"Should I let them know I have this?": Multifaceted genetic discrimination and limited awareness of legal protections amongst individuals with hereditary cancer syndromes
Gopalakrishnan Ridhi, Sam Jordan, Butkowsky Carly, Reble Emma, Clausen Marc, Rajeziesfahani Sepideh, et al. "Should I let them know I have this?": Multifaceted genetic discrimination and limited awareness of legal protections amongst individuals with hereditary cancer syndromes. Public Health Genomics. 2024;:1-21.
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The advent of forensic DNA databases: It’s time to agree on some international governance principles!
Uberoi Diya, Palmour Nicole, Joly Yann. The advent of forensic DNA databases: It’s time to agree on some international governance principles!. Forensic Science International: Genetics. 2024;72:103095. Available from: https://www.sciencedirect.com/science/article/pii/S1872497324000917
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Analyzing Discrimination Based on Genetic Information: Review, Critique and Proposal
Akash Akash, Sarker Shuvro Prosun. Analyzing Discrimination Based on Genetic Information: Review, Critique and Proposal. Lentera Hukum. 2024;11(2):157-188. Available from: https://www.researchgate.net/publication/384889296_Analysing_Discrimination_based_on_Genetic_Information
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The Key Features of a Genetic Nondiscrimination Policy A Delphi Consensus Statement
Uberoi Diya, Dalpé Gratien, Cheung Katherine, Kondrup Emma, Palmour Nicole, Arawi Thalia, et al. The Key Features of a Genetic Nondiscrimination Policy A Delphi Consensus Statement. JAMA Netw Open. 2024; Available from: https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2824110
A proposal for an inclusive working definition of genetic discrimination to promote a more coherent debate
Kaiser Beatrice, Uberoi Diya, Raven-Adams Maili C., Cheung Katherine, Bruns Andreas, Chandrasekharan Subhashini, et al. A proposal for an inclusive working definition of genetic discrimination to promote a more coherent debate. Nat Genet. 2024; Available from: https://www.nature.com/articles/s41588-024-01786-8
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The Genetic Information Nondiscrimination Act and workplace genetic testing: Knowledge and perceptions of employed adults in the United States
Willard Lindsay, Uhlmann Wendy, Prince Anya E. R., Blasco Drew, Pal Subhamoy, Roberts J. Scott, et al. The Genetic Information Nondiscrimination Act and workplace genetic testing: Knowledge and perceptions of employed adults in the United States. J Genet Couns. 2024;
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“Uninsurable because of a genetic test”: a qualitative study of consumer views about the use of genetic test results in Australian life insurance
Muller Cassandra, Gallacher Lyndon, Keogh Louise, McInerney-Leo Aideen, Boughtwood Tiffany, Gleeson Penny, et al. “Uninsurable because of a genetic test”: a qualitative study of consumer views about the use of genetic test results in Australian life insurance. Eur J Hum Genet. 2024;32(7):827-836. Available from: https://www.nature.com/articles/s41431-024-01602-1
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Australian researcher's perspectives on the Australian industry-led moratorium on genetic tests in life insurance
Yanes Tatiane, Blencoe Marisa, Howard Antonia, Tiller Jane, Wallingford Courtney, Otlowski Margaret, et al. Australian researcher's perspectives on the Australian industry-led moratorium on genetic tests in life insurance. Am J Med Genet A. 2024;194(6):e63565.
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Discrimination Based on Genetic Information in South Asia: An Exploratory Study of Constitutions and Relevant Laws
Akash, Sarker Shuvro Prosun. Discrimination Based on Genetic Information in South Asia: An Exploratory Study of Constitutions and Relevant Laws. International Journal of Legal Information. 2024;:1-14. Available from: https://www.cambridge.org/core/journals/international-journal-of-legal-information/article/discrimination-based-on-genetic-in...
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Future implications of polygenic risk scores for life insurance underwriting
Yanes Tatiane, Tiller Jane, Haining Casey M., Wallingford Courtney, Otlowski Margaret, Keogh Louise, et al. Future implications of polygenic risk scores for life insurance underwriting. npj Genom. Med.. 2024;9(1):1-6. Available from: https://www.nature.com/articles/s41525-024-00407-x
The Regulation of Health-Related Direct-to-Consumer Genetic Tests in South Africa by the Medicines and Related Substances Act
Gooden Amy, Thaldar Donrich. The Regulation of Health-Related Direct-to-Consumer Genetic Tests in South Africa by the Medicines and Related Substances Act. South African Law Journal. 2024;141(1):112-142. Available from: https://journals.co.za/doi/abs/10.47348/SALJ/v141/i1a6
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Genetic testing and actuarial science
Macdonald Angus S. Genetic testing and actuarial science. Annals of Actuarial Science. 2024;18(1):1-4. Available from: https://www.cambridge.org/core/journals/annals-of-actuarial-science/article/genetic-testing-and-actuarial-science/A7DFEEEEFD7...
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Does Ukraine need a specific regulation related to the applying of genetic information for risk assessment in insurance?
Arych Mykhailo, Shchubelka Khrystyna, Wolfsberger Walter, Oleksyk Taras K. Does Ukraine need a specific regulation related to the applying of genetic information for risk assessment in insurance?. Finance of Ukraine. 2024;(2):85-100. Available from: https://finukr.com.ua/index.php/journal/article/view/14
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Canada’s Genetic Non-Discrimination Act has only had a limited impact on the use of genetic information by life insurers
Joly Yann, Uberoi Diya. Canada’s Genetic Non-Discrimination Act has only had a limited impact on the use of genetic information by life insurers. . 2024; Available from: https://theconversation.com/canadas-genetic-non-discrimination-act-has-only-had-a-limited-impact-on-the-use-of-genetic-inform...
Parents' attitudes towards research involving genome sequencing of their healthy children: a qualitative study
Di Carlo Christina, Mighton Chloe, Clausen Marc, Joshi Esha, Casalino Selina, Kim Theresa H. M., et al. Parents' attitudes towards research involving genome sequencing of their healthy children: a qualitative study. Eur J Hum Genet. 2024;32(2):171-175.
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Should secondary pharmacogenomic variants be actively screened and reported when diagnostic genome-wide sequencing is performed in a child?
Friedman Jan M. Should secondary pharmacogenomic variants be actively screened and reported when diagnostic genome-wide sequencing is performed in a child?. Genetics in Medicine. 2024;26(2)
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P892: “Should I let them know I have this?”: Concerns and experiences of genetic discrimination amongst individuals with hereditary cancer syndromes
Gopalakrishnan Ridhi, Reble Emma, Sam Jordan, Butkowsky Carly, Clausen Marc, Rajeziesfahani Sepideh, et al. P892: “Should I let them know I have this?”: Concerns and experiences of genetic discrimination amongst individuals with hereditary cancer syndromes. Genetics in Medicine Open. 2024;2 Available from: https://www.gimopen.org/article/S2949-7744(24)00952-X/fulltext
Still using genetic data? A comparative review of Canadian life insurance application forms before and after the GNDA
Joly Yann, Fernando Amy, Kondrup Emma, Cheung Katherine, Uberoi Diya. Still using genetic data? A comparative review of Canadian life insurance application forms before and after the GNDA. Facets. 2024; Available from: https://www.facetsjournal.com/doi/full/10.1139/facets-2023-0101
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Canada's Genetic Non-Discrimination Act: False Security for Customers of Direct-to-Consumer Genetic Testing Services
Di Felice Victoria. Canada's Genetic Non-Discrimination Act: False Security for Customers of Direct-to-Consumer Genetic Testing Services. McGill Journal of Law and Health. 2024;16(1):1-36. Available from: https://heinonline.org/HOL/P?h=hein.journals/mcghealp16&i=1
In Their Own Image: Ethical Implications of the Rise of Digital Twins/Clones/Simulacra in Healthcare
Amram Benjamin, Klempner Uri, Leibler Yehuda, Greenbaum Dov. In Their Own Image: Ethical Implications of the Rise of Digital Twins/Clones/Simulacra in Healthcare. The American Journal of Bioethics. 2023;23(9):79-81. Available from: https://doi.org/10.1080/15265161.2023.2237456
Canadian Healthcare Professionals’ Views and Attitudes toward Risk-Stratified Breast Cancer Screening
Lapointe Julie, Côté Jean-Martin, Mbuya-Bienge Cynthia, Dorval Michel, Pashayan Nora, Chiquette Jocelyne, et al. Canadian Healthcare Professionals’ Views and Attitudes toward Risk-Stratified Breast Cancer Screening. Journal of Personalized Medicine. 2023;13(7):1027. Available from: https://www.mdpi.com/2075-4426/13/7/1027
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Is legislation to prevent genetic discrimination necessary in Japan? An overview of the current policies and public attitudes
Muto Kaori, Nagai Akiko, Ri Izen, Takashima Kyoko, Yoshida Sachie. Is legislation to prevent genetic discrimination necessary in Japan? An overview of the current policies and public attitudes. J Hum Genet. 2023;:1-7. Available from: https://www.nature.com/articles/s10038-023-01163-z
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Community concerns about genetic discrimination in life insurance persist in Australia: A survey of consumers offered genetic testing
Tiller Jane, Bakshi Andrew, Dowling Grace, Keogh Louise, McInerney-Leo Aideen, Barlow-Stewart Kristine, et al. Community concerns about genetic discrimination in life insurance persist in Australia: A survey of consumers offered genetic testing. Eur J Hum Genet. 2023;:1-9. Available from: https://www.nature.com/articles/s41431-023-01373-1
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Disclosing Privacy and Discrimination Protections in Informed Consent
Prince Anya. Disclosing Privacy and Discrimination Protections in Informed Consent. Health Matrix: The Journal of Law-Medicine. 2023;33(1):79. Available from: https://scholarlycommons.law.case.edu/healthmatrix/vol33/iss1/2
The Slippery Slope of Prenatal Testing for Social Traits
Canter Courtney, Foley Kathleen, Callier Shawneequa L., Meagher Karen M., Waltz Margaret, Washington Aurora, et al. The Slippery Slope of Prenatal Testing for Social Traits. Am J Bioeth. 2023;23(3):36-38.
Frozen and forgotten: What are South African fertility clinics to do with surplus cryopreserved embryos once their patients lose interest?
Thaldar Donrich W., Edgcumbe Aliki. Frozen and forgotten: What are South African fertility clinics to do with surplus cryopreserved embryos once their patients lose interest?. Developing World Bioethics. 2023;n/a(n/a) Available from: https://onlinelibrary.wiley.com/doi/abs/10.1111/dewb.12422
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Defusing the legal and ethical minefield of epigenetic applications in the military, defense, and security context
Dalpé Gratien, Huerne Katherine, Dupras Charles, Cheung Katherine, Winkler Eva, Alex Karla, et al. Defusing the legal and ethical minefield of epigenetic applications in the military, defense, and security context. Journal of Law & Bioethics. 2023;
GATTACA is still pertinent 25 years later
Greenbaum Dov, Gerstein Mark. GATTACA is still pertinent 25 years later. Nat Genet. 2022;:1-3. Available from: https://www.nature.com/articles/s41588-022-01242-5
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Genetic discrimination still casts a large shadow in 2022
Joly Yann, Dalpe Gratien. Genetic discrimination still casts a large shadow in 2022. Eur J Hum Genet. 2022;:1-3. Available from: https://www.nature.com/articles/s41431-022-01194-8
Researcher perspectives on ethics considerations in epigenetics: an international survey
Dupras Charles, Knoppers Terese, Palmour Nicole, Beauchamp Elisabeth, Liosi Stamatina, Siebert Reiner, et al. Researcher perspectives on ethics considerations in epigenetics: an international survey. Clin Epigenet. 2022;14(1):110. Available from: https://doi.org/10.1186/s13148-022-01322-7
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Health care implications of the Genetic Non-Discrimination Act: Protection for Canadians’ genetic information
Cowan James S., Kagedan Barbara Laine, Graham Gail E., Heim-Myers Bev, Bombard Yvonne. Health care implications of the Genetic Non-Discrimination Act: Protection for Canadians’ genetic information. Canadian Family Physician. 2022;68(9):643-646. Available from: https://www.cfp.ca/content/68/9/643
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Health professionals’ views and experiences of the Australian moratorium on genetic testing and life insurance: A qualitative study
Dowling Grace, Tiller Jane, McInerney-Leo Aideen, Belcher Andrea, Haining Casey, Barlow-Stewart Kristine, et al. Health professionals’ views and experiences of the Australian moratorium on genetic testing and life insurance: A qualitative study. Eur J Hum Genet. 2022;:1-7. Available from: https://www.nature.com/articles/s41431-022-01150-6
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Privacy and the Genetic Community
Leib-Neri Marisa A., Prince Anya E. R. Privacy and the Genetic Community. The American Journal of Bioethics. 2022;22(7):70-72. Available from: https://www.tandfonline.com/doi/full/10.1080/15265161.2022.2075972
The goldilocks conundrum: Disclosing discrimination risks in informed consent
Prince Anya E. R., Suter Sonia M., Uhlmann Wendy R., Scherer Aaron M. The goldilocks conundrum: Disclosing discrimination risks in informed consent. Journal of Genetic Counseling. 2022;n/a(n/a) Available from: https://onlinelibrary.wiley.com/doi/abs/10.1002/jgc4.1613
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Auditing the Editor: A Review of Key Translational Issues in Epigenetic Editing
Huerne Katherine, Palmour Nicole, Wu Angela Ruohao, Beck Stephan, Berner Alison, Siebert Reiner, et al. Auditing the Editor: A Review of Key Translational Issues in Epigenetic Editing. The CRISPR Journal. 2022; Available from: https://www.liebertpub.com/doi/10.1089/crispr.2021.0094
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Genetic Discrimination in Access to Life Insurance: Does Ukrainian Legislation Offer Sufficient Protection against the Adverse Consequences of the Genetic Revolution to Insurance Applicants?
Arych Mykhailo, Joly Yann. Genetic Discrimination in Access to Life Insurance: Does Ukrainian Legislation Offer Sufficient Protection against the Adverse Consequences of the Genetic Revolution to Insurance Applicants?. Laws. 2021;11(1):2. Available from: https://www.mdpi.com/2075-471X/11/1/2
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Navigating the ethical maze of genomics in Canada’s military
Beauvais M J S, Knoppers B M, Boscarino C. Navigating the ethical maze of genomics in Canada’s military. BMJ Mil Health. 2021;:e001954. Available from: https://militaryhealth.bmj.com/lookup/doi/10.1136/bmjmilitary-2021-001954
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Toward a Framework for Assessing Privacy Risks in Multi-Omic Research and Databases
Dupras Charles, Bunnik Eline M. Toward a Framework for Assessing Privacy Risks in Multi-Omic Research and Databases. The American Journal of Bioethics. 2021;21(12):46-64. Available from: https://doi.org/10.1080/15265161.2020.1863516
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The persistent lack of knowledge and misunderstanding of the Genetic Information Nondiscrimination Act (GINA) more than a decade after passage
Lenartz Andrea, Scherer Aaron M., Uhlmann Wendy R., Suter Sonia M., Anderson Hartley Colleen, Prince Anya E. R. The persistent lack of knowledge and misunderstanding of the Genetic Information Nondiscrimination Act (GINA) more than a decade after passage. Genetics in Medicine. 2021;23(12):2324-2334. Available from: https://www.nature.com/articles/s41436-021-01268-w
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The omics of our lives: practices and policies of direct-to-consumer epigenetic and microbiomic testing companies
Knoppers Terese, Beauchamp Elisabeth, Dewar Ken, Kimmins Sarah, Bourque Guillaume, Joly Yann, et al. The omics of our lives: practices and policies of direct-to-consumer epigenetic and microbiomic testing companies. New Genetics and Society. 2021;0(0):1-29. Available from: https://doi.org/10.1080/14636778.2021.1997576
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Genetic testing and insurance implications: Surveying the US general population about discrimination concerns and knowledge of the Genetic Information Nondiscrimination Act (GINA)
Prince Anya E. R., Uhlmann Wendy R., Suter Sonia M., Scherer Aaron M. Genetic testing and insurance implications: Surveying the US general population about discrimination concerns and knowledge of the Genetic Information Nondiscrimination Act (GINA). Risk Management and Insurance Review. 2021;n/a(n/a) Available from: https://onlinelibrary.wiley.com/doi/abs/10.1111/rmir.12195
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Responsible use of polygenic risk scores in the clinic: potential benefits, risks and gaps
Polygenic Risk Score Task Force of the International Common Disease Alliance, Adeyemo Adebowale, Balaconis Mary K., Darnes Deanna R., Fatumo Segun, Granados Moreno Palmira, et al. Responsible use of polygenic risk scores in the clinic: potential benefits, risks and gaps. Nat Med. 2021; Available from: https://www.nature.com/articles/s41591-021-01549-6
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The Genetic Discrimination Observatory: confronting novel issues in genetic discrimination
Joly Yann, Huerne Katherine, Arych Mykhailo, Bombard Yvonne, De Paor Aisling, Dove Edward S., et al. The Genetic Discrimination Observatory: confronting novel issues in genetic discrimination. Trends in Genetics. 2021;37(11):951-954. Available from: https://www.sciencedirect.com/science/article/pii/S0168952521002286
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Three decades of genetic privacy: a metaphoric journey
Knoppers Bartha Maria, Beauvais Michael J S. Three decades of genetic privacy: a metaphoric journey. Human Molecular Genetics. 2021;30(R2):R156-R160. Available from: https://academic.oup.com/hmg/article/30/R2/R156/6307333
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Genetic Testing in Insurance Implications for Non-EU Insurance Markets as a Part of the European Integration Process
Arych Mykhailo, Levon Mariia, Arych Halyna, Kulynych Yurii. Genetic Testing in Insurance Implications for Non-EU Insurance Markets as a Part of the European Integration Process. OJMNE. 2021;(36):25-52. Available from: http://neweurope.centre.ubbcluj.ro/wp-content/uploads/2021/09/2.pdf
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A step forward, but still inadequate: Australian health professionals’ views on the genetics and life insurance moratorium
Tiller Jane M., Keogh Louise A., McInerney-Leo Aideen M., Belcher Andrea, Barlow-Stewart Kristine, Boughtwood Tiffany, et al. A step forward, but still inadequate: Australian health professionals’ views on the genetics and life insurance moratorium. Journal of Medical Genetics. 2021; Available from: https://jmg.bmj.com/content/early/2021/09/20/jmedgenet-2021-107989
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Risk-Stratified Approach to Breast Cancer Screening in Canada: Women’s Knowledge of the Legislative Context and Concerns about Discrimination from Genetic and Other Predictive Health Data
Alarie Samuel, Hagan Julie, Dalpe Gratien, Faraji Sina, Mbuya-Bienge Cynthia, Nabi Hermann, et al. Risk-Stratified Approach to Breast Cancer Screening in Canada: Women’s Knowledge of the Legislative Context and Concerns about Discrimination from Genetic and Other Predictive Health Data. Journal of Personalized Medicine. 2021;11(8):726. Available from: https://www.mdpi.com/2075-4426/11/8/726
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Genetic discrimination: introducing the Asian perspective to the debate
Kim Hannah, Ho Calvin W. L., Ho Chih-Hsing, Athira P. S., Kato Kazuto, De Castro Leonardo, et al. Genetic discrimination: introducing the Asian perspective to the debate. npj Genom. Med.. 2021;6(1):1-8. Available from: https://www.nature.com/articles/s41525-021-00218-4
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Genetic discrimination in life insurance: a human rights issue
Tiller Jane, Delatycki Martin B. Genetic discrimination in life insurance: a human rights issue. Journal of Medical Ethics. 2021;47(7):484-485. Available from: https://jme.bmj.com/content/47/7/484
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Anti-selection & Genetic Testing in Insurance: An Interdisciplinary Perspective
Golinghorst Dexter, De Paor Aisling, Joly Yann, Macdonald Angus S., Otlowski Margaret, Peter Richard, et al. Anti-selection & Genetic Testing in Insurance: An Interdisciplinary Perspective. . 2021; Available from: https://www.cambridge.org/core/journals/journal-of-law-medicine-and-ethics/article/antiselection-genetic-testing-in-insurance...
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Normalising life at risk of Huntington’s disease. A qualitative study of backgrounds and coping strategies of fears of genetic discrimination
Wauters Annet, Van Hoyweghen Ine. Normalising life at risk of Huntington’s disease. A qualitative study of backgrounds and coping strategies of fears of genetic discrimination. Eur J Hum Genet. 2021;29(6):940-948. Available from: http://www.nature.com/articles/s41431-021-00822-z
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Study protocol: the Australian genetics and life insurance moratorium—monitoring the effectiveness and response (A-GLIMMER) project
Tiller Jane, McInerney-Leo Aideen, Belcher Andrea, Boughtwood Tiffany, Gleeson Penny, Delatycki Martin, et al. Study protocol: the Australian genetics and life insurance moratorium—monitoring the effectiveness and response (A-GLIMMER) project. BMC Medical Ethics. 2021;22(1):63. Available from: https://doi.org/10.1186/s12910-021-00634-2
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Erring In Law and In Fact: The Supreme Court of Canada’s Reference Re Genetic Non-Discrimination Act
Joly Yann, Dalpe Gratien, Gallois Hortense, Knoppers Bartha Maria, Turp Daniel. Erring In Law and In Fact: The Supreme Court of Canada’s Reference Re Genetic Non-Discrimination Act. Canadian Bar Review. 2021;99(1):172-192. Available from: https://cbr.cba.org/index.php/cbr/article/view/4662
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Monitoring the genetic testing and life insurance moratorium in Australia: a national research project
Tiller Jane, Winship Ingrid, Otlowski Margaret FA, Lacaze Paul A. Monitoring the genetic testing and life insurance moratorium in Australia: a national research project. Medical Journal of Australia. 2021;214(4):157. Available from: https://onlinelibrary.wiley.com/doi/10.5694/mja2.50922
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Women's Views on Multifactorial Breast Cancer Risk Assessment and Risk-Stratified Screening: A Population-Based Survey from Four Provinces in Canada
Mbuya Bienge Cynthia, Pashayan Nora, Brooks Jennifer D., Dorval Michel, Chiquette Jocelyne, Eloy Laurence, et al. Women's Views on Multifactorial Breast Cancer Risk Assessment and Risk-Stratified Screening: A Population-Based Survey from Four Provinces in Canada. J Pers Med. 2021;11(2) Available from: https://www.mdpi.com/2075-4426/11/2/95
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Can Genetic Nondiscrimination Laws Save Lives?
Rothstein Mark A. Can Genetic Nondiscrimination Laws Save Lives?. Hastings Center Report. 2021;51(1):6-7. Available from: http://doi.wiley.com/10.1002/hast.1204
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Digital Health, Artificial Intelligence and Accessibility to Health Care in Denmark
Audrey Lebret, Timo Minssen. Digital Health, Artificial Intelligence and Accessibility to Health Care in Denmark. European Human Rights Law Review. 2021;(1):39-49. Available from: https://jura.ku.dk/english/staff/research/?pure=en%2Fpublications%2Fdigital-health-artificial-intelligence-and-accessibility-...
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Genetic discrimination views in online discussion forums: Perspectives from Canadian forumites
Dalpe Gratien, Pinkesz Miriam, Oliviero Elisabeth, Tolymbek Maria, Joly Yann. Genetic discrimination views in online discussion forums: Perspectives from Canadian forumites. Journal of Genetic Counseling. 2021;00:1-16. Available from: https://onlinelibrary.wiley.com/doi/abs/10.1002/jgc4.1427
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Les enjeux québécois de la discrimination génétique : l’expérience d’un forum en ligne
Dalpe Gratien, Pinkesz Miriam, Marrocco Gabriel, Joly Yann. Les enjeux québécois de la discrimination génétique : l’expérience d’un forum en ligne. Les ateliers de l'éthique / The Ethics Forum. 2021;15(1-2):4-38. Available from: https://doi.org/10.7202/1077527ar
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The Problems with Patchwork: State Approaches to Regulating Insurer Use of Genetic Information
Anderson Jarrod, Lewis Anna, Prince Anya. The Problems with Patchwork: State Approaches to Regulating Insurer Use of Genetic Information. DePaul J. Health Care L.. 2021;22(1):1. Available from: https://via.library.depaul.edu/jhcl/vol22/iss1/1/?utm_source=via.library.depaul.edu%2Fjhcl%2Fvol22%2Fiss1%2F1&utm_medium=PDF&...
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A survey of U. S. state insurance commissioners concerning genetic testing and life insurance: Redux at 27
Golinghorst Dexter R., Prince Anya E. R. A survey of U. S. state insurance commissioners concerning genetic testing and life insurance: Redux at 27. J Genet Couns. 2020;29(6):928-935. Available from: https://pubmed.ncbi.nlm.nih.gov/31850620/
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Banning Genetic Discrimination in Life Insurance — Time to Follow Florida’s Lead
Rothstein Mark A., Brothers Kyle B. Banning Genetic Discrimination in Life Insurance — Time to Follow Florida’s Lead. N Engl J Med. 2020;383(22):2099-2101. Available from: http://www.nejm.org/doi/10.1056/NEJMp2024123
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Looking Beyond GINA: Policy Approaches to Address Genetic Discrimination
Joly Yann, Dupras Charles, Pinkesz Miriam, Tovino Stacey A., Rothstein Mark A. Looking Beyond GINA: Policy Approaches to Address Genetic Discrimination. Annu. Rev. Genom. Hum. Genet.. 2020;21(1):491-507. Available from: https://www.annualreviews.org/doi/10.1146/annurev-genom-111119-011436
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Denmark
Minssen Timo. Denmark. In: AI, Big Data and Machine Learning. 2nd edition. London: Global Legal Group Ltd; 2020. p. 113-128. Available from: https://www.acc.com/sites/default/files/resources/upload/GLI-AIML20_E-Edition.pdf
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Establishing the International Genetic Discrimination Observatory
Joly Yann, Dalpe Gratien, Dupras Charles, Bévière-Boyer Bénédicte, de Paor Aisling, Dove Edward S., et al. Establishing the International Genetic Discrimination Observatory. Nat Genet. 2020;52(5):466-468. Available from: https://www.nature.com/articles/s41588-020-0606-5
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Human rights in the postgenomic era: Challenges and opportunities arising with epigenetics
Dupras Charles, Joly Yann, Rial-Sebbag Emmanuelle. Human rights in the postgenomic era: Challenges and opportunities arising with epigenetics. Social Science Information. 2020;59(1):12-34. Available from: http://journals.sagepub.com/doi/10.1177/0539018419900139
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Genomics: data sharing needs an international code of conduct
Phillips Mark, Molnár-Gábor Fruzsina, Korbel Jan O., Thorogood Adrian, Joly Yann, Chalmers Don, et al. Genomics: data sharing needs an international code of conduct. Nature. 2020;578(7793):31-33. Available from: http://www.nature.com/articles/d41586-020-00082-9
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Genetic discrimination by Australian insurance companies: a survey of consumer experiences
Tiller Jane, Morris Susan, Rice Toni, Barter Krystal, Riaz Moeen, Keogh Louise, et al. Genetic discrimination by Australian insurance companies: a survey of consumer experiences. European Journal of Human Genetics : EJHG. 2020;28(1):108-113. Available from: https://proxy.library.mcgill.ca/login?url=https://www.proquest.com/scholarly-journals/genetic-discrimination-australian-insur...
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Proxy Discrimination in the Age of Artificial Intelligence and Big Data
Prince Anya E R, Schwarcz Daniel. Proxy Discrimination in the Age of Artificial Intelligence and Big Data. Iowa Law Review. 2020;105:62. Available from: https://scholarship.law.umn.edu/cgi/viewcontent.cgi?article=1695&context=faculty_articles
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Predictive Health Information and Employment Discrimination under the ADA and GINA
Rothstein Mark A. Predictive Health Information and Employment Discrimination under the ADA and GINA. J. Law. Med. Ethics. 2020;48(3):595-602. Available from: https://www.cambridge.org/core/product/identifier/S1073110500026772/type/journal_article
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L’utilisation des tests génétiques dans le domaine de l’assurance en droit français et européen : une affaire d’assurance et de politique publique
Byk Christian. L’utilisation des tests génétiques dans le domaine de l’assurance en droit français et européen : une affaire d’assurance et de politique publique. In: Khoury, Lara; Blackett, Adelle; Vanhonnaeker, Lukas, editors. Genetic Testing and the Governance of Risk in the Contemporary Economy: Comparative Reflections in the Insurance and Employment Law Contexts. Cham: Springer International Publishing; 2020. p. 193-220. Available from: http://link.springer.com/10.1007/978-3-030-43699-5
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Regulating the Use of Genetic Testing by Insurers and Employers in the Province of Quebec: Is the Genetic Non-Discrimination Act Really Necessary?
Joly Yann, Marrocco Gabriel. Regulating the Use of Genetic Testing by Insurers and Employers in the Province of Quebec: Is the Genetic Non-Discrimination Act Really Necessary?. In: Khoury, Lara; Blackett, Adelle; Vanhonnaeker, Lukas, editors. Genetic Testing and the Governance of Risk in the Contemporary Economy: Comparative Reflections in the Insurance and Employment Law Contexts. Cham: Springer International Publishing; 2020. p. 269-292. Available from: https://doi.org/10.1007/978-3-030-43699-5_12
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Réflexions éthiques et juridiques sur la modification génétique constitutionnelle des cellules germinales humaines
Bévière-Boyer Bénédicte. Réflexions éthiques et juridiques sur la modification génétique constitutionnelle des cellules germinales humaines. Revue générale de droit médical. 2020;(77):16. Available from: https://www.bnds.fr/revue/rgdm/rgdm-77/reflexions-ethiques-et-juridiques-sur-la-modification-genetique-constitutionnelle-des-...
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Ethical and legal challenges of artificial intelligence-driven healthcare
Gerke Sara, Minssen Timo, Cohen Glenn. Ethical and legal challenges of artificial intelligence-driven healthcare. Artificial Intelligence in Healthcare. 2020;:295-336. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7332220/
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Obtencion y Utilizacion de Datos Geneticos en la Contratacion de Seguros. La Dificil Concrecion de la Prohibicion de Discriminacion
Nicolás Pilar. Obtencion y Utilizacion de Datos Geneticos en la Contratacion de Seguros. La Dificil Concrecion de la Prohibicion de Discriminacion. Revista da Faculdade Mineira de Direito. 2019;22(43) Available from: http://periodicos.pucminas.br/index.php/Direito/article/view/21250
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The law of genetic privacy: applications, implications, and limitations
Clayton Ellen Wright, Evans Barbara J, Hazel James W, Rothstein Mark A. The law of genetic privacy: applications, implications, and limitations. Journal of Law and the Biosciences. 2019;6(1):1-36. Available from: https://doi.org/10.1093/jlb/lsz007
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Is Genetic Discrimination Back on the Radar? A Commentary on the Recent Court of Appeal Reference Decision on the Genetic Non- Discrimination Act (GNDA)
Joly Yann, Dalpe Gratien, Pinkesz Miriam. Is Genetic Discrimination Back on the Radar? A Commentary on the Recent Court of Appeal Reference Decision on the Genetic Non- Discrimination Act (GNDA). Canadian Journal of Bioethics. 2019;2(2):94-96. Available from: https://doi.org/10.7202/1064941ar
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Potential (mis)use of epigenetic age estimators by private companies and public agencies: human rights law should provide ethical guidance
Dupras Charles, Beck Stephan, Rothstein Mark A, Berner Alison, Saulnier Katie M, Pinkesz Miriam, et al. Potential (mis)use of epigenetic age estimators by private companies and public agencies: human rights law should provide ethical guidance. Environmental Epigenetics. 2019;5(3):dvz018. Available from: https://doi.org/10.1093/eep/dvz018
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Genetic testing and insurance in Australia.
Otlowski Margaret, Barlow-Stewart Kristine, Lacaze Paul, Tiller Jane. Genetic testing and insurance in Australia.. Australian journal of general practice. 2019;48(3):96-99. Available from: https://proxy.library.mcgill.ca/login?url=https://www.proquest.com/scholarly-journals/genetic-testing-insurance-australia/doc...
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Comparative perspectives: regulating insurer use of genetic information
Prince Anya E.R. Comparative perspectives: regulating insurer use of genetic information. Eur J Hum Genet. 2019;27(3):340-348. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6460564/
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In Search of Solidarity: Personalised Medicine in Denmark
Katharina O Cathaoir. In Search of Solidarity: Personalised Medicine in Denmark. Nordisk socialrättslig tidskrift. 2019;(21-22):65-95. Available from: https://jura.ku.dk/english/staff/research/?pure=en%2Fpublications%2Fin-search-of-solidarity-personalised-medicine-in-denmark(...
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Genetic testing and insurance in Australia
Otlowski Margaret, Tiller Jane, Barlow -Stewart Kristine, Lacaze Paul. Genetic testing and insurance in Australia. Australian Journal of General Practice. 2019;48(3):96-99. Available from: https://search.informit.org/doi/abs/10.3316/INFORMIT.245625531942179
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Personlig medicin - en udfordring for patienters rettigheder?
Katharina O Cathaoir. Personlig medicin - en udfordring for patienters rettigheder?. Juristen. 2019;(6):219-231. Available from: https://jura.ku.dk/english/staff/research/?pure=en%2Fpublications%2Fin-search-of-solidarity-personalised-medicine-in-denmark(...
System of Legal Regulation of Operations Related to Genome Maneuvers
Nartai Azhar, Shalkharov Yernar Sailaubekovich, International Kazakh-Turkish University after H.A.Yessevi, Bitemirov Kairat Turlybaevich, International Kazakh-Turkish University after H.A.Yessevi. System of Legal Regulation of Operations Related to Genome Maneuvers. Theoretical & Applied Science. 2018;68(12):376-378. Available from: http://www.t-science.org/arxivDOI/2018/12-68/12-68-57.html
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The Place of Acts Regarding to Genetic Engineering in The System of Legal Regulation (Legal Analysis)
Nartai Azhar, Shalkharov Yernar Sailaubekovich, International Kazakh-Turkish University after H.A.Yessevi, Bitemirov Kairat Turlybaevich, International Kazakh-Turkish University after H.A.Yessevi. The Place of Acts Regarding to Genetic Engineering in The System of Legal Regulation (Legal Analysis). Theoretical & Applied Science. 2018;68(12):373-375. Available from: http://www.t-science.org/arxivDOI/2018/12-68/12-68-56.html
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The Role of Human Genome Related Legal Study Development
Nartai Azhar, Shalkharov Yernar Sailaubekovich, International Kazakh-Turkish University after H.A.Yessevi, Bitemirov Kairat Turlybaevich, International Kazakh-Turkish University after H.A.Yessevi. The Role of Human Genome Related Legal Study Development. Theoretical & Applied Science. 2018;68(12):290-292. Available from: http://www.t-science.org/arxivDOI/2018/12-68/12-68-43.html
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Political economy, stakeholder voices, and saliency: lessons from international policies regulating insurer use of genetic information
Prince Anya E R. Political economy, stakeholder voices, and saliency: lessons from international policies regulating insurer use of genetic information. Journal of Law and the Biosciences. 2018;5(3):461-494. Available from: https://doi.org/10.1093/jlb/lsz001
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ASSAf consensus study on the ethical, legal and social implications of genetics and genomics in South Africa
Pepper Michael S., Dandara Collet, de Vries Jantina, Dhai Amaboo, Labuschaigne Melodie, Mnyongani Freddy, et al. ASSAf consensus study on the ethical, legal and social implications of genetics and genomics in South Africa. S. Afr. J. Sci. 2018;114(11/12) Available from: https://www.sajs.co.za/article/view/5822
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How are genetic test results being used by Australian life insurers?
Barlow-Stewart K., Liepins M., Doble A., Otlowski M. How are genetic test results being used by Australian life insurers?. Eur J Hum Genet. 2018;26(9):1248-1256. Available from: https://www.nature.com/articles/s41431-018-0198-z
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China: concurring regulation of cross-border genomic data sharing for statist control and individual protection
Chen Yongxi, Song Lingqiao. China: concurring regulation of cross-border genomic data sharing for statist control and individual protection. Hum Genet. 2018;137(8):605-615. Available from: http://link.springer.com/10.1007/s00439-018-1903-2
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Epigenetic Discrimination: Emerging Applications of Epigenetics Pointing to the Limitations of Policies Against Genetic Discrimination
Dupras Charles, Song Lingqiao, Saulnier Katie M., Joly Yann. Epigenetic Discrimination: Emerging Applications of Epigenetics Pointing to the Limitations of Policies Against Genetic Discrimination. Front. Genet.. 2018;9:202. Available from: https://www.frontiersin.org/article/10.3389/fgene.2018.00202/full
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The Genetic Non-Discrimination Act: critical for promoting health and science in Canada
Bombard Yvonne, Heim-Myers Bev. The Genetic Non-Discrimination Act: critical for promoting health and science in Canada. CMAJ. 2018;190(19):E579-E580. Available from: http://www.cmaj.ca/lookup/doi/10.1503/cmaj.180298
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GINA at Ten and the Future of Genetic Nondiscrimination Law
Rothstein Mark A. GINA at Ten and the Future of Genetic Nondiscrimination Law. Hastings Center Report. 2018;48(3):5-7. Available from: https://onlinelibrary.wiley.com/doi/10.1002/hast.847
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Concerns about Genetic Discrimination after Regulation: A Qualitative Study of the Situation Regarding BRCA and Huntington’s Disease in Belgium
Wauters Annet, Van Hoyweghen Ine. Concerns about Genetic Discrimination after Regulation: A Qualitative Study of the Situation Regarding BRCA and Huntington’s Disease in Belgium. Laws. 2018;7(2):17. Available from: http://www.mdpi.com/2075-471X/7/2/17
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Time to End the Use of Genetic Test Results in Life Insurance Underwriting
Rothstein Mark A. Time to End the Use of Genetic Test Results in Life Insurance Underwriting. J. Law. Med. Ethics. 2018;46(3):794-801. Available from: https://www.cambridge.org/core/product/identifier/S1073110500023007/type/journal_article
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Genetics, Insurance and Professional Practice: Survey of the Australasian Clinical Genetics Workforce
Tiller Jane, Keogh Louise, Wake Samantha, Delatycki Martin, Otlowski Margaret, Lacaze Paul. Genetics, Insurance and Professional Practice: Survey of the Australasian Clinical Genetics Workforce. Frontiers in Public Health. 2018;6 Available from: https://www.frontiersin.org/article/10.3389/fpubh.2018.00333
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The Dangers of Direct-to-Consumer Genetic Testing for Alzheimer’s Disease
Lacaze Paul, Tiller Jane, Ryan Joanne. The Dangers of Direct-to-Consumer Genetic Testing for Alzheimer’s Disease. Bioethical Inquiry. 2017;14(4):585-587. Available from: https://doi.org/10.1007/s11673-017-9817-6
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Breast Cancer Risk Estimation and Personal Insurance: A Qualitative Study Presenting Perspectives from Canadian Patients and Decision Makers
Dalpe Gratien, Ngueng Feze Ida, Salman Shahad, Joly Yann, Hagan Julie, Lévesque Emmanuelle, et al. Breast Cancer Risk Estimation and Personal Insurance: A Qualitative Study Presenting Perspectives from Canadian Patients and Decision Makers. Frontiers in Genetics. 2017;8 Available from: http://journal.frontiersin.org/article/10.3389/fgene.2017.00128/full
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Comparative Approaches to Genetic Discrimination: Chasing Shadows?
Joly Yann, Feze Ida Ngueng, Song Lingqiao, Knoppers Bartha M. Comparative Approaches to Genetic Discrimination: Chasing Shadows?. Trends in Genetics. 2017;33(5):299-302. Available from: https://linkinghub.elsevier.com/retrieve/pii/S0168952517300331
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DNA Testing for Family Reunification in Canada: Points to Consider
Joly Yann, Salman Shahad, Ngueng Feze Ida, Granados Moreno Palmira, Stanton-Jean Michèle, Lacey Jacqueline, et al. DNA Testing for Family Reunification in Canada: Points to Consider. Int. Migration & Integration. 2017;18(2):391-404. Available from: http://link.springer.com/10.1007/s12134-016-0496-7
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Genetic Discrimination: A Case for a European Legislative Response?
de Paor Aisling. Genetic Discrimination: A Case for a European Legislative Response?. Eur J Health Law. 2017;24(2):135-159. Available from: https://brill.com/view/journals/ejhl/24/2/article-p135_3.xml
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Normative Approaches to Address Genetic Discrimination: Placebo or Panacea?
Joly Yann, Ngueng Feze Ida, Song Lingqiao, Knoppers Bartha Maria. Normative Approaches to Address Genetic Discrimination: Placebo or Panacea?. . 2017; Available from: https://papers.ssrn.com/abstract=2911199
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Insurance and genetic tests
Byk Christian. Insurance and genetic tests. Revue générale du droit des assurances. 2017;n° 114e7(2):97. Available from: https://www.labase-lextenso.fr/revue-generale-du-droit-des-assurances/RGA114e7
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Ancestry Testing and the Practice of Genetic Counseling
Kirkpatrick Brianne E., Rashkin Misha D. Ancestry Testing and the Practice of Genetic Counseling. J Genet Counsel. 2017;26(1):6-20. Available from: http://doi.wiley.com/10.1007/s10897-016-0014-2
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Exporting DNA – striking a balance between preventing exploitation and promoting innovation
Pepper M S. Exporting DNA – striking a balance between preventing exploitation and promoting innovation. S Afr Med J. 2017;107(2):106. Available from: http://www.samj.org.za/index.php/samj/article/view/11797
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Genetics and Insurance in Australia: Concerns around a Self-Regulated Industry
Newson Ainsley J., Tiller Jane, Keogh Louise A., Otlowski Margaret, Lacaze Paul. Genetics and Insurance in Australia: Concerns around a Self-Regulated Industry. PHG. 2017;20(4):247-256. Available from: https://www.karger.com/Article/FullText/481450
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Insurance Risk Classification in an Era of Genomics: Is a Rational Discrimination Policy Rational?
Prince Anya E.R. Insurance Risk Classification in an Era of Genomics: Is a Rational Discrimination Policy Rational?. Neb Law Rev. 2017;96(3):624-687. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6934377/
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Should Australia Ban the Use of Genetic Test Results in Life Insurance?
Tiller Jane, Otlowski Margaret, Lacaze Paul. Should Australia Ban the Use of Genetic Test Results in Life Insurance?. Frontiers in Public Health. 2017;5 Available from: https://www.frontiersin.org/article/10.3389/fpubh.2017.00330
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Genetic Discrimination in Quebec: A flexible and proactive approach to address a complex social issue
Joly Y., Dupras C., Ngueng Feze I., Song L. Genetic Discrimination in Quebec: A flexible and proactive approach to address a complex social issue. 2017. Available from: https://www.genomequebec.com/DATA/PUBLICATION/32_en~v~Genetic_Discrimination_in_Quebec_-_Policy_Brief.pdf
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Epigenetics ELSI: Darker Than You Think?
Joly Yann, So Derek, Saulnier Katie, Dyke Stephanie O. M. Epigenetics ELSI: Darker Than You Think?. Trends Genet. 2016;32(10):591-592. Available from: https://www.cell.com/trends/genetics/fulltext/S0168-9525(16)30069-5
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Global trends on fears and concerns of genetic discrimination: a systematic literature review
Wauters Annet, Van Hoyweghen Ine. Global trends on fears and concerns of genetic discrimination: a systematic literature review. J Hum Genet. 2016;61(4):275-282. Available from: https://www.nature.com/articles/jhg2015151
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Implications of direct-to-consumer whole-exome sequencing in South Africa
Lombard Zané, Baine Fiona, Krause Amanda, Lochan Anneline, Macualay Shelley, Spencer Careni, et al. Implications of direct-to-consumer whole-exome sequencing in South Africa. S Afr Med J. 2016;106(2):139. Available from: http://www.samj.org.za/index.php/samj/article/view/10534
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How Genetics Might Affect Real Property Rights
Rothstein Mark A., Rothstein Laura. How Genetics Might Affect Real Property Rights. J. Law. Med. Ethics. 2016;44(1):216-221. Available from: https://www.cambridge.org/core/product/identifier/S1073110500020866/type/journal_article
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Limiting Occupational Medical Evaluations under the Americans with Disabilities Act and the Genetic Information Nondiscrimination Act
Rothstein Mark A., Roberts Jessica, Guidotti Tee L. Limiting Occupational Medical Evaluations under the Americans with Disabilities Act and the Genetic Information Nondiscrimination Act. Am. J. Law. Med.. 2015;41(4):523-567. Available from: https://www.cambridge.org/core/product/identifier/S009885880000349X/type/journal_article
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Innovations of the Americans With Disabilities Act: Confronting Disability Discrimination in Employment
Rothstein Mark A. Innovations of the Americans With Disabilities Act: Confronting Disability Discrimination in Employment. JAMA. 2015;313(22):2221-2222. Available from: https://doi.org/10.1001/jama.2015.3417
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Perspective of Theoretical Consideration in the Text of the Article "Cloning of the Person" of the New Criminal Code of the Republic of Kazakhstan from the Position of the International and Foreign Experience of Countries of Western Europe in particular the United Kingdom: Comparative Analysis
Shalkharov Yernar Sailaubekovich, Nakipov Balgabay Isakulovich, International Kazakh Turkish University by name of K.A.Yessevi, Batyrbaev Nurlan Muhtarovich, International Kazakh Turkish University by name of K.A.Yessevi, Urazbaev Kuanyshbek Baimbetovich, et al. Perspective of Theoretical Consideration in the Text of the Article "Cloning of the Person" of the New Criminal Code of the Republic of Kazakhstan from the Position of the International and Foreign Experience of Countries of Western Europe in particular the United Kingdom: Comparative Analysis. Theoretical & Applied Science. 2015;23(03):138-145. Available from: http://www.t-science.org/arxivDOI/2015/03(23)/03(23)_24.html
Regulating Genetic Discrimination in the European Union: Pushing the EU into Unchartered Territory or Ushering in a New Genomic Era?
de Paor Aisling, Ferri Delia. Regulating Genetic Discrimination in the European Union: Pushing the EU into Unchartered Territory or Ushering in a New Genomic Era?. European Journal of Law Reform. 2015;17(1):14-32. Available from: http://www.elevenjournals.com/doi/10.5553/EJLR/138723702015017001002
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Problems of Consumer Protection Legislation in the Sphere of Medical Education System as a Course to Achieve Goal of Correct Connection Between Doctor and Patient in Kazakhstan, Central Asia (Discripting Approach)
Akmadov Shamuhamet Nurmuhamedovich, Batyrbaev Nurlan Muhtarovich, International Kazakh-Turkish University by name of H.A.Yessevy Kazakhstan, Shalkharov Yernar Sailaubekovich, International Kazakh-Turkish University by name of H.A.Yessevi. Kazakhstan. Problems of Consumer Protection Legislation in the Sphere of Medical Education System as a Course to Achieve Goal of Correct Connection Between Doctor and Patient in Kazakhstan, Central Asia (Discripting Approach). Theoretical & Applied Science. 2015;21(01):126-128. Available from: http://www.t-science.org/arxivDOI/2015/01(21)/01(21)_21.html
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Applied Aspects of Application of Insurance of Professional Responsibility of Doctor in Medical Conflicts and Affecting Mechanisms on Area of Prosecution in Kazakhstan Republic, Central Asia: Description Approach
Dusipov Erkin Shajaevich, Batyrbaev Nurlan Muhtarovich, International Kazakh-Turkish University by name of H.A.Yessevy Kazakhstan, Uderbaev Nurlybek Nurlanovich, Kazakh Medical University of Continuing Education Kazakhstan, Shalkharov Yernar Sailaubekovich, et al. Applied Aspects of Application of Insurance of Professional Responsibility of Doctor in Medical Conflicts and Affecting Mechanisms on Area of Prosecution in Kazakhstan Republic, Central Asia: Description Approach. Theoretical & Applied Science. 2015;21(01):89-93. Available from: http://www.t-science.org/arxivDOI/2015/01(21)/01(21)_16.html
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Ethical, legal and social implications of incorporating personalized medicine into healthcare
Brothers Kyle B, Rothstein Mark A. Ethical, legal and social implications of incorporating personalized medicine into healthcare. Personalized Medicine. 2015;12(1):43-51. Available from: https://www.futuremedicine.com/doi/abs/10.2217/pme.14.65
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Genetics and Personal Insurance: the Perspectives of Canadian Cancer Genetic Counselors
Lane Michelle, Ngueng Feze Ida, Joly Yann. Genetics and Personal Insurance: the Perspectives of Canadian Cancer Genetic Counselors. Journal of Genetic Counseling. 2015;24(6):1022-1036. Available from: https://onlinelibrary.wiley.com/doi/abs/10.1007/s10897-015-9841-9
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Genetic discrimination: transatlantic perspectives on the case for a European-level legal response
Genetic discrimination: transatlantic perspectives on the case for a European-level legal response. Abingdon, Oxon ; New York, NY: Routledge; 2015. Available from: https://www.routledge.com/Genetic-Discrimination-Transatlantic-Perspectives-on-the-Case-for-a-European/Quinn-Paor-Blanck/p/bo...
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Recommendations for Centres of Expertise in Rare Anaemias. The ENERCA White Book
Vives Corrons Joan-Lluis, del Mar Mañú Pereira María, Romeo-Casabona Carlos, Nicolás Pilar, Gulbis Béatrice, Eleftheriou Androulla, et al. Recommendations for Centres of Expertise in Rare Anaemias. The ENERCA White Book. Thalassemia Reports. 2014;4(3):86-90. Available from: https://www.mdpi.com/2039-4365/4/3/4878
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Genetic information, non-discrimination, and privacy protections in genetic counseling practice
Prince Anya E. R., Roche Myra I. Genetic information, non-discrimination, and privacy protections in genetic counseling practice. J Genet Couns. 2014;23(6):891-902. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4233176/
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The Genetic Information Nondiscrimination Act (GINA) of 2008
Prince Anya E.R., Watersone M. The Genetic Information Nondiscrimination Act (GINA) of 2008. In: Quinn, Gerard; de Paor, Aisling; Blanck, Peter, editors. Genetic Discrimination: Transatlantic Perspectives on the Case for a European-level Legal Response. 1st. London: Routledge; 2014. p. 300. Available from: https://www.tandfonline.com/doi/full/10.1080/09687599.2015.1075951#:~:text=non%2Ddiscrimination%20regulations.-,Genetic%20Dis...
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Genetic discrimination and insurance in Canada: Where are we now?
Nicholls Stuart, Joly Yann, Moher Ester, Little Julian. Genetic discrimination and insurance in Canada: Where are we now?. On The Risk. 2014;30:46-52. Available from: https://www.researchgate.net/publication/262138157_Genetic_discrimination_and_insurance_in_Canada_Where_are_we_now
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Can’t Always Get What you Want? Try an Indirect Route you Just Might Get What you Need: A Study on Access to Genetic Data by Canadian Life Insurers
Feze Ida, Joly Yann. Can’t Always Get What you Want? Try an Indirect Route you Just Might Get What you Need: A Study on Access to Genetic Data by Canadian Life Insurers. CPPM. 2014;12(1):56-64. Available from: http://www.eurekaselect.com/openurl/content.php?genre=article&issn=1875-6921&volume=12&issue=1&spage=56
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Life insurance: genomic stratification and risk classification
Joly Yann, Burton Hilary, Knoppers Bartha Maria, Feze Ida Ngueng, Dent Tom, Pashayan Nora, et al. Life insurance: genomic stratification and risk classification. Eur J Hum Genet. 2014;22(5):575-579. Available from: http://www.nature.com/articles/ejhg2013228
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Streitkultur and the governance of genetic testing and insurance in Germany
Lander Jonas, Van Hoyweghen Ine. Streitkultur and the governance of genetic testing and insurance in Germany. New Genetics and Society. 2014;33(1):42-59. Available from: https://www.tandfonline.com/doi/full/10.1080/14636778.2013.873336
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Genetic discrimination and life insurance: a systematic review of the evidence
Joly Yann, Ngueng Feze Ida, Simard Jacques. Genetic discrimination and life insurance: a systematic review of the evidence. BMC Med. 2013;11(1):25. Available from: http://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-11-25
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Genetic Discrimination in Employment Is Indefensible
Rothstein Mark A. Genetic Discrimination in Employment Is Indefensible. Hastings Center Report. 2013;43(6):3-4. Available from: https://onlinelibrary.wiley.com/doi/10.1002/hast.219
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Ethical, legal, and social implications of incorporating genomic information into electronic health records
Hazin Ribhi, Brothers Kyle B., Malin Bradley A., Koenig Barbara A., Sanderson Saskia C., Rothstein Mark A., et al. Ethical, legal, and social implications of incorporating genomic information into electronic health records. Genet Med. 2013;15(10):810-816. Available from: https://www.nature.com/articles/gim2013117
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Life insurance and genetic test results: a mutation carrier's fight to achieve full cover
Keogh Louise A., Otlowski Margaret F. A. Life insurance and genetic test results: a mutation carrier's fight to achieve full cover. Med. J. Aust.. 2013;199(5) Available from: https://www.mja.com.au/journal/2013/199/5/life-insurance-and-genetic-test-results-mutation-carriers-fight-achieve-full
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Harm, hype and evidence: ELSI research and policy guidance
Caulfield Timothy, Chandrasekharan Subhashini, Joly Yann, Cook-Deegan Robert. Harm, hype and evidence: ELSI research and policy guidance. Genome Medicine. 2013;5(3):21. Available from: https://doi.org/10.1186/gm425
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Personalized medicine and access to health care: potential for inequitable access?
McClellan Kelly A, Avard Denise, Simard Jacques, Knoppers Bartha M. Personalized medicine and access to health care: potential for inequitable access?. Eur J Hum Genet. 2013;21(2):143-147. Available from: http://www.nature.com/articles/ejhg2012149
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Comprehensive Protection of Genetic Information: One Size Privacy or Property Models May Not Fit All
Prince Anya. Comprehensive Protection of Genetic Information: One Size Privacy or Property Models May Not Fit All. Brooklyn Law Review. 2013;79(1) Available from: https://brooklynworks.brooklaw.edu/blr/vol79/iss1/4
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Genetic privacy: an evaluation of the ethical and legal landscape
Genetic privacy: an evaluation of the ethical and legal landscape. London: Imperial College Press; 2013. Available from: https://www.worldscientific.com/worldscibooks/10.1142/p906
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Your genes in insurance: from genetic discrimination to genomic solidarity
Van Hoyweghen Ine, Rebert Lisa. Your genes in insurance: from genetic discrimination to genomic solidarity. Personalized Medicine. 2012;9(8):871-877. Available from: https://www.futuremedicine.com/doi/10.2217/pme.12.96
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Unravelling fears of genetic discrimination: an exploratory study of Dutch HCM families in an era of genetic non-discrimination acts
Geelen Els, Horstman Klasien, Marcelis Carlo LM, Doevendans Pieter A, Van Hoyweghen Ine. Unravelling fears of genetic discrimination: an exploratory study of Dutch HCM families in an era of genetic non-discrimination acts. Eur J Hum Genet. 2012;20(10):1018-1023. Available from: http://www.nature.com/articles/ejhg201253
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Beyond the patient: The broader impact of genetic discrimination among individuals at risk of Huntington disease
Bombard Yvonne, Palin JoAnne, Friedman Jan M., Veenstra Gerry, Creighton Susan, Bottorff Joan L., et al. Beyond the patient: The broader impact of genetic discrimination among individuals at risk of Huntington disease. Am. J. Med. Genet.. 2012;159B(2):217-226. Available from: https://onlinelibrary.wiley.com/doi/10.1002/ajmg.b.32016
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Genetic discrimination: international perspectives
Otlowski M., Taylor S., Bombard Y. Genetic discrimination: international perspectives. Annu Rev Genomics Hum Genet. 2012;13:433-454. Available from: https://www.annualreviews.org/doi/abs/10.1146/annurev-genom-090711-163800
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When does an illness begin: genetic discrimination and disease manifestation
Prince Anya E. R., Berkman Benjamin E. When does an illness begin: genetic discrimination and disease manifestation. J Law Med Ethics. 2012;40(3):655-664. Available from: https://journals.sagepub.com/doi/abs/10.1111/j.1748-720X.2012.00696.x
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Factors associated with experiences of genetic discrimination among individuals at risk for huntington disease
Bombard Yvonne, Palin JoAnne, Friedman Jan M., Veenstra Gerry, Creighton Susan, Paulsen Jane S., et al. Factors associated with experiences of genetic discrimination among individuals at risk for huntington disease. Am. J. Med. Genet.. 2011;156(1):19-27. Available from: https://onlinelibrary.wiley.com/doi/10.1002/ajmg.b.31130
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Genetic discrimination in private insurance: global perspectives
Joly Yann, Braker Maria, Le Huynh Michael. Genetic discrimination in private insurance: global perspectives. New Genetics and Society. 2010;29(4):351-368. Available from: https://www.tandfonline.com/doi/full/10.1080/14636778.2010.528189
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Taming the wild life of genes by law? Genes reconfiguring solidarity in private insurance
Van Hoyweghen Ine. Taming the wild life of genes by law? Genes reconfiguring solidarity in private insurance. New Genetics and Society. 2010;29(4):431-455. Available from: https://www.tandfonline.com/doi/full/10.1080/14636778.2010.528190
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Practices and Attitudes of Australian Employers in Relation to the Use of Genetic Information: Report on a National Study
Otlowski Margaret, Stranger Mark, Taylor Sandra, Barlow-Stewart Kristine, Treloar Susan. Practices and Attitudes of Australian Employers in Relation to the Use of Genetic Information: Report on a National Study. Comparative Labor Law & Policy Journal. 2010;31(4):637-691. Available from: http://heinonline.org/hol-cgi-bin/get_pdf.cgi?handle=hein.journals/cllpj31§ion=40
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Perception, experience, and response to genetic discrimination in Huntington disease: The international RESPOND-HD study
Erwin Cheryl, Williams Janet K., Juhl Andrew R., Mengeling Michelle, Mills James A., Bombard Yvonne, et al. Perception, experience, and response to genetic discrimination in Huntington disease: The international RESPOND-HD study. Am. J. Med. Genet.. 2010;9999B:n/a-n/a. Available from: https://onlinelibrary.wiley.com/doi/10.1002/ajmg.b.31079
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In their own words: Reports of stigma and genetic discrimination by people at risk for Huntington disease in the International RESPOND-HD study
Williams Janet K., Erwin Cheryl, Juhl Andrew R., Mengeling Michelle, Bombard Yvonne, Hayden Michael R., et al. In their own words: Reports of stigma and genetic discrimination by people at risk for Huntington disease in the International RESPOND-HD study. Am. J. Med. Genet.. 2010;9999B:n/a-n/a. Available from: https://onlinelibrary.wiley.com/doi/10.1002/ajmg.b.31080
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Gina's Beauty is Only Skin Deep
Rothstein Mark A. Gina's Beauty is Only Skin Deep. Gene Watch. 2009;22(2):9-12. Available from: https://papers.ssrn.com/abstract=1519975
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Ethical implications of epigenetics research
Rothstein Mark A., Cai Yu, Marchant Gary E. Ethical implications of epigenetics research. Nat Rev Genet. 2009;10(4):224-224. Available from: https://www.nature.com/articles/nrg2562
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Verification of consumers' experiences and perceptions of genetic discrimination and its impact on utilization of genetic testing.
Barlow-Stewart Kristine, Taylor Sandra D, Treloar Susan A, Stranger Mark, Otlowski Margaret. Verification of consumers' experiences and perceptions of genetic discrimination and its impact on utilization of genetic testing.. Genetics in medicine : official journal of the American College of Medical Genetics. 2009;11(3):193-201. Available from: https://www.nature.com/articles/gim200928
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The Ghost in our Genes: Legal and Ethical Implications of Epigenetics
Rothstein Mark A., Cai Yu, Marchant Gary E. The Ghost in our Genes: Legal and Ethical Implications of Epigenetics. Health Matrix Clevel. 2009;19(1):1-62. Available from: https://asu.pure.elsevier.com/en/publications/the-ghost-in-our-genes-legal-and-ethical-implications-of-epigenet
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Keeping Your Genes Private
Rothstein Mark A. Keeping Your Genes Private. Sci Am. 2008;299(3):64-69. Available from: https://www.scientificamerican.com/article/keeping-your-genes-private
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Putting the Genetic Information Nondiscrimination Act in context
Rothstein Mark A. Putting the Genetic Information Nondiscrimination Act in context. Genetics in Medicine. 2008;10(9):655-656. Available from: https://linkinghub.elsevier.com/retrieve/pii/S1098360021030975
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European Practices of Genetic Information and Insurance: Lessons for the Genetic Information Nondiscrimination Act
Van Hoyweghen Ine, Horstman Klasien. European Practices of Genetic Information and Insurance: Lessons for the Genetic Information Nondiscrimination Act. JAMA. 2008;300(3):326. Available from: http://jama.jamanetwork.com/article.aspx?doi=10.1001/jama.2008.62
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Confidentiality, privacy, and security of genetic and genomic test information in electronic health records: points to consider
McGuire Amy L., Fisher Rebecca, Cusenza Paul, Hudson Kathy, Rothstein Mark A., McGraw Deven, et al. Confidentiality, privacy, and security of genetic and genomic test information in electronic health records: points to consider. Genet Med. 2008;10(7):495-499. Available from: https://www.nature.com/articles/gim200876
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Investigating genetic discrimination in Australia: a large-scale survey of clinical genetics clients
Taylor S., Treloar S., Barlow-Stewart K., Stranger M., Otlowski M. Investigating genetic discrimination in Australia: a large-scale survey of clinical genetics clients. Clin Genet. 2008;74(1):20-30. Available from: https://onlinelibrary.wiley.com/doi/10.1111/j.1399-0004.2008.01016.x
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Perceptions of discrimination among persons who have undergone predictive testing for Huntington's disease
Penziner Elizabeth, Williams Janet K., Erwin Cheryl, Bombard Yvonne, Wallis Anne, Beglinger Leigh J., et al. Perceptions of discrimination among persons who have undergone predictive testing for Huntington's disease. Am. J. Med. Genet.. 2008;147B(3):320-325. Available from: https://onlinelibrary.wiley.com/doi/10.1002/ajmg.b.30600
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Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease
Bombard Yvonne, Penziner Elizabeth, Suchowersky Oksana, Guttman Mark, Paulsen Jane S, Bottorff Joan L, et al. Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease. Eur J Hum Genet. 2008;16(3):279-289. Available from: http://www.nature.com/articles/5201937
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GINA, the ADA, and Genetic Discrimination in Employment
Rothstein Mark A. GINA, the ADA, and Genetic Discrimination in Employment. J Law Med Ethics. 2008;36(4):837-840. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3035561/
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Currents in Contemporary Ethics: Is GINA Worth the Wait?
Rothstein Mark A. Currents in Contemporary Ethics: Is GINA Worth the Wait?. Journal of Law, Medicine & Ethics. 2008;36(1):174-178. Available from: https://www.cambridge.org/core/journals/journal-of-law-medicine-and-ethics/article/currents-in-contemporary-ethics/AA8B630E51...
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The Use of Legal Remedies in Australia for Pursuing Allegations of Genetic Discrimination: Findings of an Empirical Study
Otlowski Margaret, Taylor Sandra, Barlowstewart Kristine, Stranger Mark, Treloar Susan. The Use of Legal Remedies in Australia for Pursuing Allegations of Genetic Discrimination: Findings of an Empirical Study. International Journal of Discrimination and the Law. 2007;9(1):3-35. Available from: https://doi.org/10.1177/135822910700900102
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Genetic ‘Risk Carriers’ and Lifestyle ‘Risk Takers’. Which Risks Deserve our Legal Protection in Insurance?
Van Hoyweghen Ine, Horstman Klasien, Schepers Rita. Genetic ‘Risk Carriers’ and Lifestyle ‘Risk Takers’. Which Risks Deserve our Legal Protection in Insurance?. Health Care Anal. 2007;15(3):179-193. Available from: https://link.springer.com/10.1007/s10728-006-0041-5
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Investigating genetic discrimination in the Australian life insurance sector: the use of genetic test results in underwriting, 1999-2003.
Otlowski Margaret, Barlow-Stewart Kristine, Taylor Sandra, Stranger Mark, Treloar Susan. Investigating genetic discrimination in the Australian life insurance sector: the use of genetic test results in underwriting, 1999-2003.. Journal of law and medicine. 2007;14(3):367-396. Available from: https://proxy.library.mcgill.ca/login?url=https://www.proquest.com/scholarly-journals/investigating-genetic-discrimination-au...
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Investigating Genetic Discrimination in Australia: Perceptions and Experiences of Clinical Genetics Service Clients regarding Coercion to Test, Insurance and Employment
Taylor Sandra, Treloar Susan, Barlow-Stewart Kristine, Otlowski Margaret, Stranger Mark. Investigating Genetic Discrimination in Australia: Perceptions and Experiences of Clinical Genetics Service Clients regarding Coercion to Test, Insurance and Employment. Australian Journal of Emerging Technologies and Society. 2007;5(2):63-83. Available from: https://espace.library.uq.edu.au/view/UQ:134802
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Consumer Experiences and Predictive Genetic Testing
Otlowski M, Skene L. Consumer Experiences and Predictive Genetic Testing. In: Stranger, M, editor. Human Biotechnology and Public Trust: Trends, Perceptions and Regulation. Centre for Law and Genetics; 2007. Available from: https://eprints.utas.edu.au/5980/
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‘Genetic Privacy, Discrimination and Insurance’
Otlowski Margaret. ‘Genetic Privacy, Discrimination and Insurance’. In: Disputes and Dilemmas in Health Law. Federation Press; 2006. Available from: https://books.google.ca/books/about/Disputes_and_Dilemmas_in_Health_Law.html?id=61JVEXzkcygC&redir_esc=y
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The Expanding Use of DNA in Law Enforcement: What Role for Privacy?
Rothstein Mark A., Talbott Meghan K. The Expanding Use of DNA in Law Enforcement: What Role for Privacy?. Journal of Law, Medicine & Ethics. 2006;34(2):153-164. Available from: https://www.cambridge.org/core/journals/journal-of-law-medicine-and-ethics/article/abs/expanding-use-of-dna-in-law-enforcemen...
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Use of Genetic Test Information in Life Insurance: An Evaluation of Different Regulatory Models
Otlowski Margaret. Use of Genetic Test Information in Life Insurance: An Evaluation of Different Regulatory Models. Journal of International Biotechnology Law. 2005;2(3):99-104. Available from: https://www.degruyter.com/document/doi/10.1515/jibl.2005.2.3.99/html
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Genetic Discrimination By Insurers As A Result Of Genetic Research And Testing: A Comparison Of National Policies
Freishtat R. J., Joly Y., Avard D., Ellenberg M., Knoppers B. M. Genetic Discrimination By Insurers As A Result Of Genetic Research And Testing: A Comparison Of National Policies. J Investig Med. 2005;53(2):S396.2-S396. Available from: https://jim.bmj.com/lookup/doi/10.2310/6650.2005.00205.52
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Knowing Your Genes
Barlow-Stewart S., Taylor S., Otlowski M. F. A. Knowing Your Genes. In: Australian Social Attitudes: The First Report. University of New South Wales Press; 2005. p. 204-219. Available from: http://ecite.utas.edu.au/37733
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Exploring the concept of genetic discrimination.
Otlowski Margaret. Exploring the concept of genetic discrimination.. Journal of bioethical inquiry. 2005;2(3):165-176. Available from: https://link.springer.com/article/10.1007/BF02448597
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Investigating genetic discrimination in Australia: opportunities and challenges in the early stages.
Taylor Sandra D, Otlowski Margaret F, Barlow-Stewart Kristine K, Treloar Susan A, Stranger Mark, Chenoweth Kellie. Investigating genetic discrimination in Australia: opportunities and challenges in the early stages.. New genetics and society. 2004;23(2):225-239. Available from: https://www.tandfonline.com/doi/abs/10.1080/1463677042000237053
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An exploration of the legal and socio-ethical implications of predictive genetic testing of children.
Otlowski Margaret. An exploration of the legal and socio-ethical implications of predictive genetic testing of children.. Australian journal of family law. 2004;18(2):147-169. Available from: https://pubmed.ncbi.nlm.nih.gov/17058338/
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Physicians, genetics and life insurance
Knoppers Bartha M., Joly Yann. Physicians, genetics and life insurance. CMAJ. 2004;170(9):1421-1423. Available from: https://www.cmaj.ca/content/170/9/1421
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Genetics and Life Insurance in Canada: Points to Consider
Knoppers Bartha Maria, Lemmens Trudo, Joly Yann, Godard Béatrice, Avard Denise, Clark Teren, et al. Genetics and Life Insurance in Canada: Points to Consider. CMAJ : Canadian Medical Association Journal. 2004;170(9) Available from: https://papyrus.bib.umontreal.ca/xmlui/handle/1866/76
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Genetics and life insurance: medical underwriting and social policy
Genetics and life insurance: medical underwriting and social policy. Cambridge, Mass: MIT Press; 2004. (Basic bioethics). Available from: https://mitpress.mit.edu/books/genetics-and-life-insurance
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Methodological considerations in the study of genetic discrimination.
Treloar Susan, Taylor Sandra, Otlowski Margaret, Barlow-Stewart Kristine, Stranger Mark, Chenoweth Kellie. Methodological considerations in the study of genetic discrimination.. Community genetics. 2004;7(4):161-168. Available from: https://www.karger.com/Article/Fulltext/82254
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Genetic information and life insurance: a ‘real’ risk?
Joly Yann, Knoppers Bartha M, Godard Béatrice. Genetic information and life insurance: a ‘real’ risk?. Eur J Hum Genet. 2003;11(8):561-564. Available from: http://www.nature.com/articles/5200998
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Genetic discrimination: Too few data
Otlowski Margaret F., Taylor Sandra D., Barlow-Stewart Kristine K. Genetic discrimination: Too few data. Eur J Hum Genet. 2003;11(1):1-2. Available from: https://www.nature.com/articles/5200910
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Genetic discrimination: meeting the challenges of an emerging issue.
Otlowski Margaret. Genetic discrimination: meeting the challenges of an emerging issue.. The University of New South Wales law journal. 2003;26(3):764-769. Available from: https://www.unswlawjournal.unsw.edu.au/article/genetic-discrimination-meeting-the-challenges-of-an-emerging-issue/
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Major study commencing into genetic discrimination in Australia.
Otlowski Margaret F, Taylor Sandra D, Barlow-Stewart Kristine K. Major study commencing into genetic discrimination in Australia.. Journal of law and medicine. 2002;10(1):41-48. Available from: https://europepmc.org/article/med/12242882
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Genetic Testing and Insurance: The Case for Regulation
Otlowski Margaret. Genetic Testing and Insurance: The Case for Regulation. Agenda. 2002;9(4):335-354. Available from: https://www.jstor.org/stable/43199221
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Australian empirical study into genetic discrimination.
Otlowski Margaret F, Taylor Sandra D, Barlow-Stewart Kristine K. Australian empirical study into genetic discrimination.. Genetics in medicine : official journal of the American College of Medical Genetics. 2002;4(5):392-395. Available from: https://www.nature.com/articles/gim200258
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Employers' use of genetic test information: is there a need for regulation
Otlowski Margaret. Employers' use of genetic test information: is there a need for regulation. Journal of Law and. 2002;8:1-39. Available from: http://ecite.utas.edu.au/24578
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What is genetic discrimination, and when and how can it be prevented?
Rothstein Mark A., Anderlik Mary R. What is genetic discrimination, and when and how can it be prevented?. Genetics in Medicine. 2001;3(5):354-358. Available from: https://www.gimjournal.org/article/S1098-3600(21)02803-3/fulltext
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Implications of genetic testing for Australian insurance law and practice
Otlowski Margaret. Implications of genetic testing for Australian insurance law and practice. Hobart, Tas: School of Law, University of Tasmania ; Faculty of Law, University of Melbourne; 2001. (Occasional paper / Centre for Law and Genetics, no. 1). Available from: https://catalogue.nla.gov.au/Record/3424850
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Privacy and Confidentiality of Genetic Information: What Rules for the New Science?
Anderlik Mary R., Rothstein Mark A. Privacy and Confidentiality of Genetic Information: What Rules for the New Science?. Annual Review of Genomics and Human Genetics. 2001;2(1):401-433. Available from: https://doi.org/10.1146/annurev.genom.2.1.401
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Avoiding Genetic Discrimination in Insurance: An Exploration of the Legality and Ethics of Precautionary Measures in Anticipation of Unfavourable Test Outcomes
Otlowski Margaret. Avoiding Genetic Discrimination in Insurance: An Exploration of the Legality and Ethics of Precautionary Measures in Anticipation of Unfavourable Test Outcomes. Monash Bioethics Review. 2001;20(1):24–32. Available from: https://philpapers.org/rec/OTLAGD
Resolving the Conundrum: Should Insurers be Entitled to Access Genetic Test Information?
Margaret Otlowski. Resolving the Conundrum: Should Insurers be Entitled to Access Genetic Test Information?. Insurance Law Journal. 2000;11:193-215.
Genetic Privacy and Confidentiality: Why They are So Hard to Protect
Rothstein Mark A. Genetic Privacy and Confidentiality: Why They are So Hard to Protect. J. Law. Med. Ethics. 1998;26(3):198-204. Available from: https://www.cambridge.org/core/product/identifier/S107311050001305X/type/journal_article
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Genetic secrets: protecting privacy and confidentiality in the genetic era
Genetic secrets: protecting privacy and confidentiality in the genetic era. New Haven: Yale University Press; 1997. Available from: https://yalebooks.yale.edu/book/9780300080636/genetic-secrets
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Genetic discrimination in insurance and employment based on personalized risk stratification for breast cancer screening
Reveiz Manuela, Bouhouita-Guermech Sarah, Blackmore Kristina, Chiquette Jocelyne, Demers Éric, Dorval Michel, et al. Genetic discrimination in insurance and employment based on personalized risk stratification for breast cancer screening. Frontiers in Genetics. 2025;16 Available from: https://www.frontiersin.org/journals/genetics/articles/10.3389/fgene.2025.1481863/full
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"Should I let them know I have this?": Multifaceted genetic discrimination and limited awareness of legal protections amongst individuals with hereditary cancer syndromes
Gopalakrishnan Ridhi, Sam Jordan, Butkowsky Carly, Reble Emma, Clausen Marc, Rajeziesfahani Sepideh, et al. "Should I let them know I have this?": Multifaceted genetic discrimination and limited awareness of legal protections amongst individuals with hereditary cancer syndromes. Public Health Genomics. 2024;:1-21.
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The advent of forensic DNA databases: It’s time to agree on some international governance principles!
Uberoi Diya, Palmour Nicole, Joly Yann. The advent of forensic DNA databases: It’s time to agree on some international governance principles!. Forensic Science International: Genetics. 2024;72:103095. Available from: https://www.sciencedirect.com/science/article/pii/S1872497324000917
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Analyzing Discrimination Based on Genetic Information: Review, Critique and Proposal
Akash Akash, Sarker Shuvro Prosun. Analyzing Discrimination Based on Genetic Information: Review, Critique and Proposal. Lentera Hukum. 2024;11(2):157-188. Available from: https://www.researchgate.net/publication/384889296_Analysing_Discrimination_based_on_Genetic_Information
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The Key Features of a Genetic Nondiscrimination Policy A Delphi Consensus Statement
Uberoi Diya, Dalpé Gratien, Cheung Katherine, Kondrup Emma, Palmour Nicole, Arawi Thalia, et al. The Key Features of a Genetic Nondiscrimination Policy A Delphi Consensus Statement. JAMA Netw Open. 2024; Available from: https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2824110
A proposal for an inclusive working definition of genetic discrimination to promote a more coherent debate
Kaiser Beatrice, Uberoi Diya, Raven-Adams Maili C., Cheung Katherine, Bruns Andreas, Chandrasekharan Subhashini, et al. A proposal for an inclusive working definition of genetic discrimination to promote a more coherent debate. Nat Genet. 2024; Available from: https://www.nature.com/articles/s41588-024-01786-8
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The Genetic Information Nondiscrimination Act and workplace genetic testing: Knowledge and perceptions of employed adults in the United States
Willard Lindsay, Uhlmann Wendy, Prince Anya E. R., Blasco Drew, Pal Subhamoy, Roberts J. Scott, et al. The Genetic Information Nondiscrimination Act and workplace genetic testing: Knowledge and perceptions of employed adults in the United States. J Genet Couns. 2024;
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“Uninsurable because of a genetic test”: a qualitative study of consumer views about the use of genetic test results in Australian life insurance
Muller Cassandra, Gallacher Lyndon, Keogh Louise, McInerney-Leo Aideen, Boughtwood Tiffany, Gleeson Penny, et al. “Uninsurable because of a genetic test”: a qualitative study of consumer views about the use of genetic test results in Australian life insurance. Eur J Hum Genet. 2024;32(7):827-836. Available from: https://www.nature.com/articles/s41431-024-01602-1
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Australian researcher's perspectives on the Australian industry-led moratorium on genetic tests in life insurance
Yanes Tatiane, Blencoe Marisa, Howard Antonia, Tiller Jane, Wallingford Courtney, Otlowski Margaret, et al. Australian researcher's perspectives on the Australian industry-led moratorium on genetic tests in life insurance. Am J Med Genet A. 2024;194(6):e63565.
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Discrimination Based on Genetic Information in South Asia: An Exploratory Study of Constitutions and Relevant Laws
Akash, Sarker Shuvro Prosun. Discrimination Based on Genetic Information in South Asia: An Exploratory Study of Constitutions and Relevant Laws. International Journal of Legal Information. 2024;:1-14. Available from: https://www.cambridge.org/core/journals/international-journal-of-legal-information/article/discrimination-based-on-genetic-in...
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Future implications of polygenic risk scores for life insurance underwriting
Yanes Tatiane, Tiller Jane, Haining Casey M., Wallingford Courtney, Otlowski Margaret, Keogh Louise, et al. Future implications of polygenic risk scores for life insurance underwriting. npj Genom. Med.. 2024;9(1):1-6. Available from: https://www.nature.com/articles/s41525-024-00407-x
The Regulation of Health-Related Direct-to-Consumer Genetic Tests in South Africa by the Medicines and Related Substances Act
Gooden Amy, Thaldar Donrich. The Regulation of Health-Related Direct-to-Consumer Genetic Tests in South Africa by the Medicines and Related Substances Act. South African Law Journal. 2024;141(1):112-142. Available from: https://journals.co.za/doi/abs/10.47348/SALJ/v141/i1a6
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Genetic testing and actuarial science
Macdonald Angus S. Genetic testing and actuarial science. Annals of Actuarial Science. 2024;18(1):1-4. Available from: https://www.cambridge.org/core/journals/annals-of-actuarial-science/article/genetic-testing-and-actuarial-science/A7DFEEEEFD7...
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Does Ukraine need a specific regulation related to the applying of genetic information for risk assessment in insurance?
Arych Mykhailo, Shchubelka Khrystyna, Wolfsberger Walter, Oleksyk Taras K. Does Ukraine need a specific regulation related to the applying of genetic information for risk assessment in insurance?. Finance of Ukraine. 2024;(2):85-100. Available from: https://finukr.com.ua/index.php/journal/article/view/14
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Canada’s Genetic Non-Discrimination Act has only had a limited impact on the use of genetic information by life insurers
Joly Yann, Uberoi Diya. Canada’s Genetic Non-Discrimination Act has only had a limited impact on the use of genetic information by life insurers. . 2024; Available from: https://theconversation.com/canadas-genetic-non-discrimination-act-has-only-had-a-limited-impact-on-the-use-of-genetic-inform...
Parents' attitudes towards research involving genome sequencing of their healthy children: a qualitative study
Di Carlo Christina, Mighton Chloe, Clausen Marc, Joshi Esha, Casalino Selina, Kim Theresa H. M., et al. Parents' attitudes towards research involving genome sequencing of their healthy children: a qualitative study. Eur J Hum Genet. 2024;32(2):171-175.
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Should secondary pharmacogenomic variants be actively screened and reported when diagnostic genome-wide sequencing is performed in a child?
Friedman Jan M. Should secondary pharmacogenomic variants be actively screened and reported when diagnostic genome-wide sequencing is performed in a child?. Genetics in Medicine. 2024;26(2)
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P892: “Should I let them know I have this?”: Concerns and experiences of genetic discrimination amongst individuals with hereditary cancer syndromes
Gopalakrishnan Ridhi, Reble Emma, Sam Jordan, Butkowsky Carly, Clausen Marc, Rajeziesfahani Sepideh, et al. P892: “Should I let them know I have this?”: Concerns and experiences of genetic discrimination amongst individuals with hereditary cancer syndromes. Genetics in Medicine Open. 2024;2 Available from: https://www.gimopen.org/article/S2949-7744(24)00952-X/fulltext
Still using genetic data? A comparative review of Canadian life insurance application forms before and after the GNDA
Joly Yann, Fernando Amy, Kondrup Emma, Cheung Katherine, Uberoi Diya. Still using genetic data? A comparative review of Canadian life insurance application forms before and after the GNDA. Facets. 2024; Available from: https://www.facetsjournal.com/doi/full/10.1139/facets-2023-0101
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Canada's Genetic Non-Discrimination Act: False Security for Customers of Direct-to-Consumer Genetic Testing Services
Di Felice Victoria. Canada's Genetic Non-Discrimination Act: False Security for Customers of Direct-to-Consumer Genetic Testing Services. McGill Journal of Law and Health. 2024;16(1):1-36. Available from: https://heinonline.org/HOL/P?h=hein.journals/mcghealp16&i=1
In Their Own Image: Ethical Implications of the Rise of Digital Twins/Clones/Simulacra in Healthcare
Amram Benjamin, Klempner Uri, Leibler Yehuda, Greenbaum Dov. In Their Own Image: Ethical Implications of the Rise of Digital Twins/Clones/Simulacra in Healthcare. The American Journal of Bioethics. 2023;23(9):79-81. Available from: https://doi.org/10.1080/15265161.2023.2237456
Canadian Healthcare Professionals’ Views and Attitudes toward Risk-Stratified Breast Cancer Screening
Lapointe Julie, Côté Jean-Martin, Mbuya-Bienge Cynthia, Dorval Michel, Pashayan Nora, Chiquette Jocelyne, et al. Canadian Healthcare Professionals’ Views and Attitudes toward Risk-Stratified Breast Cancer Screening. Journal of Personalized Medicine. 2023;13(7):1027. Available from: https://www.mdpi.com/2075-4426/13/7/1027
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Is legislation to prevent genetic discrimination necessary in Japan? An overview of the current policies and public attitudes
Muto Kaori, Nagai Akiko, Ri Izen, Takashima Kyoko, Yoshida Sachie. Is legislation to prevent genetic discrimination necessary in Japan? An overview of the current policies and public attitudes. J Hum Genet. 2023;:1-7. Available from: https://www.nature.com/articles/s10038-023-01163-z
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Community concerns about genetic discrimination in life insurance persist in Australia: A survey of consumers offered genetic testing
Tiller Jane, Bakshi Andrew, Dowling Grace, Keogh Louise, McInerney-Leo Aideen, Barlow-Stewart Kristine, et al. Community concerns about genetic discrimination in life insurance persist in Australia: A survey of consumers offered genetic testing. Eur J Hum Genet. 2023;:1-9. Available from: https://www.nature.com/articles/s41431-023-01373-1
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Disclosing Privacy and Discrimination Protections in Informed Consent
Prince Anya. Disclosing Privacy and Discrimination Protections in Informed Consent. Health Matrix: The Journal of Law-Medicine. 2023;33(1):79. Available from: https://scholarlycommons.law.case.edu/healthmatrix/vol33/iss1/2
The Slippery Slope of Prenatal Testing for Social Traits
Canter Courtney, Foley Kathleen, Callier Shawneequa L., Meagher Karen M., Waltz Margaret, Washington Aurora, et al. The Slippery Slope of Prenatal Testing for Social Traits. Am J Bioeth. 2023;23(3):36-38.
Frozen and forgotten: What are South African fertility clinics to do with surplus cryopreserved embryos once their patients lose interest?
Thaldar Donrich W., Edgcumbe Aliki. Frozen and forgotten: What are South African fertility clinics to do with surplus cryopreserved embryos once their patients lose interest?. Developing World Bioethics. 2023;n/a(n/a) Available from: https://onlinelibrary.wiley.com/doi/abs/10.1111/dewb.12422
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Defusing the legal and ethical minefield of epigenetic applications in the military, defense, and security context
Dalpé Gratien, Huerne Katherine, Dupras Charles, Cheung Katherine, Winkler Eva, Alex Karla, et al. Defusing the legal and ethical minefield of epigenetic applications in the military, defense, and security context. Journal of Law & Bioethics. 2023;
GATTACA is still pertinent 25 years later
Greenbaum Dov, Gerstein Mark. GATTACA is still pertinent 25 years later. Nat Genet. 2022;:1-3. Available from: https://www.nature.com/articles/s41588-022-01242-5
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Genetic discrimination still casts a large shadow in 2022
Joly Yann, Dalpe Gratien. Genetic discrimination still casts a large shadow in 2022. Eur J Hum Genet. 2022;:1-3. Available from: https://www.nature.com/articles/s41431-022-01194-8
Researcher perspectives on ethics considerations in epigenetics: an international survey
Dupras Charles, Knoppers Terese, Palmour Nicole, Beauchamp Elisabeth, Liosi Stamatina, Siebert Reiner, et al. Researcher perspectives on ethics considerations in epigenetics: an international survey. Clin Epigenet. 2022;14(1):110. Available from: https://doi.org/10.1186/s13148-022-01322-7
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Health care implications of the Genetic Non-Discrimination Act: Protection for Canadians’ genetic information
Cowan James S., Kagedan Barbara Laine, Graham Gail E., Heim-Myers Bev, Bombard Yvonne. Health care implications of the Genetic Non-Discrimination Act: Protection for Canadians’ genetic information. Canadian Family Physician. 2022;68(9):643-646. Available from: https://www.cfp.ca/content/68/9/643
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Health professionals’ views and experiences of the Australian moratorium on genetic testing and life insurance: A qualitative study
Dowling Grace, Tiller Jane, McInerney-Leo Aideen, Belcher Andrea, Haining Casey, Barlow-Stewart Kristine, et al. Health professionals’ views and experiences of the Australian moratorium on genetic testing and life insurance: A qualitative study. Eur J Hum Genet. 2022;:1-7. Available from: https://www.nature.com/articles/s41431-022-01150-6
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Privacy and the Genetic Community
Leib-Neri Marisa A., Prince Anya E. R. Privacy and the Genetic Community. The American Journal of Bioethics. 2022;22(7):70-72. Available from: https://www.tandfonline.com/doi/full/10.1080/15265161.2022.2075972
The goldilocks conundrum: Disclosing discrimination risks in informed consent
Prince Anya E. R., Suter Sonia M., Uhlmann Wendy R., Scherer Aaron M. The goldilocks conundrum: Disclosing discrimination risks in informed consent. Journal of Genetic Counseling. 2022;n/a(n/a) Available from: https://onlinelibrary.wiley.com/doi/abs/10.1002/jgc4.1613
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Auditing the Editor: A Review of Key Translational Issues in Epigenetic Editing
Huerne Katherine, Palmour Nicole, Wu Angela Ruohao, Beck Stephan, Berner Alison, Siebert Reiner, et al. Auditing the Editor: A Review of Key Translational Issues in Epigenetic Editing. The CRISPR Journal. 2022; Available from: https://www.liebertpub.com/doi/10.1089/crispr.2021.0094
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Genetic Discrimination in Access to Life Insurance: Does Ukrainian Legislation Offer Sufficient Protection against the Adverse Consequences of the Genetic Revolution to Insurance Applicants?
Arych Mykhailo, Joly Yann. Genetic Discrimination in Access to Life Insurance: Does Ukrainian Legislation Offer Sufficient Protection against the Adverse Consequences of the Genetic Revolution to Insurance Applicants?. Laws. 2021;11(1):2. Available from: https://www.mdpi.com/2075-471X/11/1/2
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Navigating the ethical maze of genomics in Canada’s military
Beauvais M J S, Knoppers B M, Boscarino C. Navigating the ethical maze of genomics in Canada’s military. BMJ Mil Health. 2021;:e001954. Available from: https://militaryhealth.bmj.com/lookup/doi/10.1136/bmjmilitary-2021-001954
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Toward a Framework for Assessing Privacy Risks in Multi-Omic Research and Databases
Dupras Charles, Bunnik Eline M. Toward a Framework for Assessing Privacy Risks in Multi-Omic Research and Databases. The American Journal of Bioethics. 2021;21(12):46-64. Available from: https://doi.org/10.1080/15265161.2020.1863516
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The persistent lack of knowledge and misunderstanding of the Genetic Information Nondiscrimination Act (GINA) more than a decade after passage
Lenartz Andrea, Scherer Aaron M., Uhlmann Wendy R., Suter Sonia M., Anderson Hartley Colleen, Prince Anya E. R. The persistent lack of knowledge and misunderstanding of the Genetic Information Nondiscrimination Act (GINA) more than a decade after passage. Genetics in Medicine. 2021;23(12):2324-2334. Available from: https://www.nature.com/articles/s41436-021-01268-w
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The omics of our lives: practices and policies of direct-to-consumer epigenetic and microbiomic testing companies
Knoppers Terese, Beauchamp Elisabeth, Dewar Ken, Kimmins Sarah, Bourque Guillaume, Joly Yann, et al. The omics of our lives: practices and policies of direct-to-consumer epigenetic and microbiomic testing companies. New Genetics and Society. 2021;0(0):1-29. Available from: https://doi.org/10.1080/14636778.2021.1997576
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Genetic testing and insurance implications: Surveying the US general population about discrimination concerns and knowledge of the Genetic Information Nondiscrimination Act (GINA)
Prince Anya E. R., Uhlmann Wendy R., Suter Sonia M., Scherer Aaron M. Genetic testing and insurance implications: Surveying the US general population about discrimination concerns and knowledge of the Genetic Information Nondiscrimination Act (GINA). Risk Management and Insurance Review. 2021;n/a(n/a) Available from: https://onlinelibrary.wiley.com/doi/abs/10.1111/rmir.12195
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Responsible use of polygenic risk scores in the clinic: potential benefits, risks and gaps
Polygenic Risk Score Task Force of the International Common Disease Alliance, Adeyemo Adebowale, Balaconis Mary K., Darnes Deanna R., Fatumo Segun, Granados Moreno Palmira, et al. Responsible use of polygenic risk scores in the clinic: potential benefits, risks and gaps. Nat Med. 2021; Available from: https://www.nature.com/articles/s41591-021-01549-6
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The Genetic Discrimination Observatory: confronting novel issues in genetic discrimination
Joly Yann, Huerne Katherine, Arych Mykhailo, Bombard Yvonne, De Paor Aisling, Dove Edward S., et al. The Genetic Discrimination Observatory: confronting novel issues in genetic discrimination. Trends in Genetics. 2021;37(11):951-954. Available from: https://www.sciencedirect.com/science/article/pii/S0168952521002286
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Three decades of genetic privacy: a metaphoric journey
Knoppers Bartha Maria, Beauvais Michael J S. Three decades of genetic privacy: a metaphoric journey. Human Molecular Genetics. 2021;30(R2):R156-R160. Available from: https://academic.oup.com/hmg/article/30/R2/R156/6307333
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Genetic Testing in Insurance Implications for Non-EU Insurance Markets as a Part of the European Integration Process
Arych Mykhailo, Levon Mariia, Arych Halyna, Kulynych Yurii. Genetic Testing in Insurance Implications for Non-EU Insurance Markets as a Part of the European Integration Process. OJMNE. 2021;(36):25-52. Available from: http://neweurope.centre.ubbcluj.ro/wp-content/uploads/2021/09/2.pdf
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A step forward, but still inadequate: Australian health professionals’ views on the genetics and life insurance moratorium
Tiller Jane M., Keogh Louise A., McInerney-Leo Aideen M., Belcher Andrea, Barlow-Stewart Kristine, Boughtwood Tiffany, et al. A step forward, but still inadequate: Australian health professionals’ views on the genetics and life insurance moratorium. Journal of Medical Genetics. 2021; Available from: https://jmg.bmj.com/content/early/2021/09/20/jmedgenet-2021-107989
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Risk-Stratified Approach to Breast Cancer Screening in Canada: Women’s Knowledge of the Legislative Context and Concerns about Discrimination from Genetic and Other Predictive Health Data
Alarie Samuel, Hagan Julie, Dalpe Gratien, Faraji Sina, Mbuya-Bienge Cynthia, Nabi Hermann, et al. Risk-Stratified Approach to Breast Cancer Screening in Canada: Women’s Knowledge of the Legislative Context and Concerns about Discrimination from Genetic and Other Predictive Health Data. Journal of Personalized Medicine. 2021;11(8):726. Available from: https://www.mdpi.com/2075-4426/11/8/726
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Genetic discrimination: introducing the Asian perspective to the debate
Kim Hannah, Ho Calvin W. L., Ho Chih-Hsing, Athira P. S., Kato Kazuto, De Castro Leonardo, et al. Genetic discrimination: introducing the Asian perspective to the debate. npj Genom. Med.. 2021;6(1):1-8. Available from: https://www.nature.com/articles/s41525-021-00218-4
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Genetic discrimination in life insurance: a human rights issue
Tiller Jane, Delatycki Martin B. Genetic discrimination in life insurance: a human rights issue. Journal of Medical Ethics. 2021;47(7):484-485. Available from: https://jme.bmj.com/content/47/7/484
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Anti-selection & Genetic Testing in Insurance: An Interdisciplinary Perspective
Golinghorst Dexter, De Paor Aisling, Joly Yann, Macdonald Angus S., Otlowski Margaret, Peter Richard, et al. Anti-selection & Genetic Testing in Insurance: An Interdisciplinary Perspective. . 2021; Available from: https://www.cambridge.org/core/journals/journal-of-law-medicine-and-ethics/article/antiselection-genetic-testing-in-insurance...
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Normalising life at risk of Huntington’s disease. A qualitative study of backgrounds and coping strategies of fears of genetic discrimination
Wauters Annet, Van Hoyweghen Ine. Normalising life at risk of Huntington’s disease. A qualitative study of backgrounds and coping strategies of fears of genetic discrimination. Eur J Hum Genet. 2021;29(6):940-948. Available from: http://www.nature.com/articles/s41431-021-00822-z
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Study protocol: the Australian genetics and life insurance moratorium—monitoring the effectiveness and response (A-GLIMMER) project
Tiller Jane, McInerney-Leo Aideen, Belcher Andrea, Boughtwood Tiffany, Gleeson Penny, Delatycki Martin, et al. Study protocol: the Australian genetics and life insurance moratorium—monitoring the effectiveness and response (A-GLIMMER) project. BMC Medical Ethics. 2021;22(1):63. Available from: https://doi.org/10.1186/s12910-021-00634-2
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Erring In Law and In Fact: The Supreme Court of Canada’s Reference Re Genetic Non-Discrimination Act
Joly Yann, Dalpe Gratien, Gallois Hortense, Knoppers Bartha Maria, Turp Daniel. Erring In Law and In Fact: The Supreme Court of Canada’s Reference Re Genetic Non-Discrimination Act. Canadian Bar Review. 2021;99(1):172-192. Available from: https://cbr.cba.org/index.php/cbr/article/view/4662
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Monitoring the genetic testing and life insurance moratorium in Australia: a national research project
Tiller Jane, Winship Ingrid, Otlowski Margaret FA, Lacaze Paul A. Monitoring the genetic testing and life insurance moratorium in Australia: a national research project. Medical Journal of Australia. 2021;214(4):157. Available from: https://onlinelibrary.wiley.com/doi/10.5694/mja2.50922
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Women's Views on Multifactorial Breast Cancer Risk Assessment and Risk-Stratified Screening: A Population-Based Survey from Four Provinces in Canada
Mbuya Bienge Cynthia, Pashayan Nora, Brooks Jennifer D., Dorval Michel, Chiquette Jocelyne, Eloy Laurence, et al. Women's Views on Multifactorial Breast Cancer Risk Assessment and Risk-Stratified Screening: A Population-Based Survey from Four Provinces in Canada. J Pers Med. 2021;11(2) Available from: https://www.mdpi.com/2075-4426/11/2/95
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Can Genetic Nondiscrimination Laws Save Lives?
Rothstein Mark A. Can Genetic Nondiscrimination Laws Save Lives?. Hastings Center Report. 2021;51(1):6-7. Available from: http://doi.wiley.com/10.1002/hast.1204
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Digital Health, Artificial Intelligence and Accessibility to Health Care in Denmark
Audrey Lebret, Timo Minssen. Digital Health, Artificial Intelligence and Accessibility to Health Care in Denmark. European Human Rights Law Review. 2021;(1):39-49. Available from: https://jura.ku.dk/english/staff/research/?pure=en%2Fpublications%2Fdigital-health-artificial-intelligence-and-accessibility-...
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Genetic discrimination views in online discussion forums: Perspectives from Canadian forumites
Dalpe Gratien, Pinkesz Miriam, Oliviero Elisabeth, Tolymbek Maria, Joly Yann. Genetic discrimination views in online discussion forums: Perspectives from Canadian forumites. Journal of Genetic Counseling. 2021;00:1-16. Available from: https://onlinelibrary.wiley.com/doi/abs/10.1002/jgc4.1427
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Les enjeux québécois de la discrimination génétique : l’expérience d’un forum en ligne
Dalpe Gratien, Pinkesz Miriam, Marrocco Gabriel, Joly Yann. Les enjeux québécois de la discrimination génétique : l’expérience d’un forum en ligne. Les ateliers de l'éthique / The Ethics Forum. 2021;15(1-2):4-38. Available from: https://doi.org/10.7202/1077527ar
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The Problems with Patchwork: State Approaches to Regulating Insurer Use of Genetic Information
Anderson Jarrod, Lewis Anna, Prince Anya. The Problems with Patchwork: State Approaches to Regulating Insurer Use of Genetic Information. DePaul J. Health Care L.. 2021;22(1):1. Available from: https://via.library.depaul.edu/jhcl/vol22/iss1/1/?utm_source=via.library.depaul.edu%2Fjhcl%2Fvol22%2Fiss1%2F1&utm_medium=PDF&...
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A survey of U. S. state insurance commissioners concerning genetic testing and life insurance: Redux at 27
Golinghorst Dexter R., Prince Anya E. R. A survey of U. S. state insurance commissioners concerning genetic testing and life insurance: Redux at 27. J Genet Couns. 2020;29(6):928-935. Available from: https://pubmed.ncbi.nlm.nih.gov/31850620/
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Banning Genetic Discrimination in Life Insurance — Time to Follow Florida’s Lead
Rothstein Mark A., Brothers Kyle B. Banning Genetic Discrimination in Life Insurance — Time to Follow Florida’s Lead. N Engl J Med. 2020;383(22):2099-2101. Available from: http://www.nejm.org/doi/10.1056/NEJMp2024123
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Looking Beyond GINA: Policy Approaches to Address Genetic Discrimination
Joly Yann, Dupras Charles, Pinkesz Miriam, Tovino Stacey A., Rothstein Mark A. Looking Beyond GINA: Policy Approaches to Address Genetic Discrimination. Annu. Rev. Genom. Hum. Genet.. 2020;21(1):491-507. Available from: https://www.annualreviews.org/doi/10.1146/annurev-genom-111119-011436
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Denmark
Minssen Timo. Denmark. In: AI, Big Data and Machine Learning. 2nd edition. London: Global Legal Group Ltd; 2020. p. 113-128. Available from: https://www.acc.com/sites/default/files/resources/upload/GLI-AIML20_E-Edition.pdf
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Establishing the International Genetic Discrimination Observatory
Joly Yann, Dalpe Gratien, Dupras Charles, Bévière-Boyer Bénédicte, de Paor Aisling, Dove Edward S., et al. Establishing the International Genetic Discrimination Observatory. Nat Genet. 2020;52(5):466-468. Available from: https://www.nature.com/articles/s41588-020-0606-5
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Human rights in the postgenomic era: Challenges and opportunities arising with epigenetics
Dupras Charles, Joly Yann, Rial-Sebbag Emmanuelle. Human rights in the postgenomic era: Challenges and opportunities arising with epigenetics. Social Science Information. 2020;59(1):12-34. Available from: http://journals.sagepub.com/doi/10.1177/0539018419900139
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Genomics: data sharing needs an international code of conduct
Phillips Mark, Molnár-Gábor Fruzsina, Korbel Jan O., Thorogood Adrian, Joly Yann, Chalmers Don, et al. Genomics: data sharing needs an international code of conduct. Nature. 2020;578(7793):31-33. Available from: http://www.nature.com/articles/d41586-020-00082-9
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Genetic discrimination by Australian insurance companies: a survey of consumer experiences
Tiller Jane, Morris Susan, Rice Toni, Barter Krystal, Riaz Moeen, Keogh Louise, et al. Genetic discrimination by Australian insurance companies: a survey of consumer experiences. European Journal of Human Genetics : EJHG. 2020;28(1):108-113. Available from: https://proxy.library.mcgill.ca/login?url=https://www.proquest.com/scholarly-journals/genetic-discrimination-australian-insur...
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Proxy Discrimination in the Age of Artificial Intelligence and Big Data
Prince Anya E R, Schwarcz Daniel. Proxy Discrimination in the Age of Artificial Intelligence and Big Data. Iowa Law Review. 2020;105:62. Available from: https://scholarship.law.umn.edu/cgi/viewcontent.cgi?article=1695&context=faculty_articles
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Predictive Health Information and Employment Discrimination under the ADA and GINA
Rothstein Mark A. Predictive Health Information and Employment Discrimination under the ADA and GINA. J. Law. Med. Ethics. 2020;48(3):595-602. Available from: https://www.cambridge.org/core/product/identifier/S1073110500026772/type/journal_article
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L’utilisation des tests génétiques dans le domaine de l’assurance en droit français et européen : une affaire d’assurance et de politique publique
Byk Christian. L’utilisation des tests génétiques dans le domaine de l’assurance en droit français et européen : une affaire d’assurance et de politique publique. In: Khoury, Lara; Blackett, Adelle; Vanhonnaeker, Lukas, editors. Genetic Testing and the Governance of Risk in the Contemporary Economy: Comparative Reflections in the Insurance and Employment Law Contexts. Cham: Springer International Publishing; 2020. p. 193-220. Available from: http://link.springer.com/10.1007/978-3-030-43699-5
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Regulating the Use of Genetic Testing by Insurers and Employers in the Province of Quebec: Is the Genetic Non-Discrimination Act Really Necessary?
Joly Yann, Marrocco Gabriel. Regulating the Use of Genetic Testing by Insurers and Employers in the Province of Quebec: Is the Genetic Non-Discrimination Act Really Necessary?. In: Khoury, Lara; Blackett, Adelle; Vanhonnaeker, Lukas, editors. Genetic Testing and the Governance of Risk in the Contemporary Economy: Comparative Reflections in the Insurance and Employment Law Contexts. Cham: Springer International Publishing; 2020. p. 269-292. Available from: https://doi.org/10.1007/978-3-030-43699-5_12
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Réflexions éthiques et juridiques sur la modification génétique constitutionnelle des cellules germinales humaines
Bévière-Boyer Bénédicte. Réflexions éthiques et juridiques sur la modification génétique constitutionnelle des cellules germinales humaines. Revue générale de droit médical. 2020;(77):16. Available from: https://www.bnds.fr/revue/rgdm/rgdm-77/reflexions-ethiques-et-juridiques-sur-la-modification-genetique-constitutionnelle-des-...
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Ethical and legal challenges of artificial intelligence-driven healthcare
Gerke Sara, Minssen Timo, Cohen Glenn. Ethical and legal challenges of artificial intelligence-driven healthcare. Artificial Intelligence in Healthcare. 2020;:295-336. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7332220/
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Obtencion y Utilizacion de Datos Geneticos en la Contratacion de Seguros. La Dificil Concrecion de la Prohibicion de Discriminacion
Nicolás Pilar. Obtencion y Utilizacion de Datos Geneticos en la Contratacion de Seguros. La Dificil Concrecion de la Prohibicion de Discriminacion. Revista da Faculdade Mineira de Direito. 2019;22(43) Available from: http://periodicos.pucminas.br/index.php/Direito/article/view/21250
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The law of genetic privacy: applications, implications, and limitations
Clayton Ellen Wright, Evans Barbara J, Hazel James W, Rothstein Mark A. The law of genetic privacy: applications, implications, and limitations. Journal of Law and the Biosciences. 2019;6(1):1-36. Available from: https://doi.org/10.1093/jlb/lsz007
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Is Genetic Discrimination Back on the Radar? A Commentary on the Recent Court of Appeal Reference Decision on the Genetic Non- Discrimination Act (GNDA)
Joly Yann, Dalpe Gratien, Pinkesz Miriam. Is Genetic Discrimination Back on the Radar? A Commentary on the Recent Court of Appeal Reference Decision on the Genetic Non- Discrimination Act (GNDA). Canadian Journal of Bioethics. 2019;2(2):94-96. Available from: https://doi.org/10.7202/1064941ar
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Potential (mis)use of epigenetic age estimators by private companies and public agencies: human rights law should provide ethical guidance
Dupras Charles, Beck Stephan, Rothstein Mark A, Berner Alison, Saulnier Katie M, Pinkesz Miriam, et al. Potential (mis)use of epigenetic age estimators by private companies and public agencies: human rights law should provide ethical guidance. Environmental Epigenetics. 2019;5(3):dvz018. Available from: https://doi.org/10.1093/eep/dvz018
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Genetic testing and insurance in Australia.
Otlowski Margaret, Barlow-Stewart Kristine, Lacaze Paul, Tiller Jane. Genetic testing and insurance in Australia.. Australian journal of general practice. 2019;48(3):96-99. Available from: https://proxy.library.mcgill.ca/login?url=https://www.proquest.com/scholarly-journals/genetic-testing-insurance-australia/doc...
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Comparative perspectives: regulating insurer use of genetic information
Prince Anya E.R. Comparative perspectives: regulating insurer use of genetic information. Eur J Hum Genet. 2019;27(3):340-348. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6460564/
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In Search of Solidarity: Personalised Medicine in Denmark
Katharina O Cathaoir. In Search of Solidarity: Personalised Medicine in Denmark. Nordisk socialrättslig tidskrift. 2019;(21-22):65-95. Available from: https://jura.ku.dk/english/staff/research/?pure=en%2Fpublications%2Fin-search-of-solidarity-personalised-medicine-in-denmark(...
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Genetic testing and insurance in Australia
Otlowski Margaret, Tiller Jane, Barlow -Stewart Kristine, Lacaze Paul. Genetic testing and insurance in Australia. Australian Journal of General Practice. 2019;48(3):96-99. Available from: https://search.informit.org/doi/abs/10.3316/INFORMIT.245625531942179
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Personlig medicin - en udfordring for patienters rettigheder?
Katharina O Cathaoir. Personlig medicin - en udfordring for patienters rettigheder?. Juristen. 2019;(6):219-231. Available from: https://jura.ku.dk/english/staff/research/?pure=en%2Fpublications%2Fin-search-of-solidarity-personalised-medicine-in-denmark(...
System of Legal Regulation of Operations Related to Genome Maneuvers
Nartai Azhar, Shalkharov Yernar Sailaubekovich, International Kazakh-Turkish University after H.A.Yessevi, Bitemirov Kairat Turlybaevich, International Kazakh-Turkish University after H.A.Yessevi. System of Legal Regulation of Operations Related to Genome Maneuvers. Theoretical & Applied Science. 2018;68(12):376-378. Available from: http://www.t-science.org/arxivDOI/2018/12-68/12-68-57.html
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The Place of Acts Regarding to Genetic Engineering in The System of Legal Regulation (Legal Analysis)
Nartai Azhar, Shalkharov Yernar Sailaubekovich, International Kazakh-Turkish University after H.A.Yessevi, Bitemirov Kairat Turlybaevich, International Kazakh-Turkish University after H.A.Yessevi. The Place of Acts Regarding to Genetic Engineering in The System of Legal Regulation (Legal Analysis). Theoretical & Applied Science. 2018;68(12):373-375. Available from: http://www.t-science.org/arxivDOI/2018/12-68/12-68-56.html
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The Role of Human Genome Related Legal Study Development
Nartai Azhar, Shalkharov Yernar Sailaubekovich, International Kazakh-Turkish University after H.A.Yessevi, Bitemirov Kairat Turlybaevich, International Kazakh-Turkish University after H.A.Yessevi. The Role of Human Genome Related Legal Study Development. Theoretical & Applied Science. 2018;68(12):290-292. Available from: http://www.t-science.org/arxivDOI/2018/12-68/12-68-43.html
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Political economy, stakeholder voices, and saliency: lessons from international policies regulating insurer use of genetic information
Prince Anya E R. Political economy, stakeholder voices, and saliency: lessons from international policies regulating insurer use of genetic information. Journal of Law and the Biosciences. 2018;5(3):461-494. Available from: https://doi.org/10.1093/jlb/lsz001
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ASSAf consensus study on the ethical, legal and social implications of genetics and genomics in South Africa
Pepper Michael S., Dandara Collet, de Vries Jantina, Dhai Amaboo, Labuschaigne Melodie, Mnyongani Freddy, et al. ASSAf consensus study on the ethical, legal and social implications of genetics and genomics in South Africa. S. Afr. J. Sci. 2018;114(11/12) Available from: https://www.sajs.co.za/article/view/5822
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How are genetic test results being used by Australian life insurers?
Barlow-Stewart K., Liepins M., Doble A., Otlowski M. How are genetic test results being used by Australian life insurers?. Eur J Hum Genet. 2018;26(9):1248-1256. Available from: https://www.nature.com/articles/s41431-018-0198-z
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China: concurring regulation of cross-border genomic data sharing for statist control and individual protection
Chen Yongxi, Song Lingqiao. China: concurring regulation of cross-border genomic data sharing for statist control and individual protection. Hum Genet. 2018;137(8):605-615. Available from: http://link.springer.com/10.1007/s00439-018-1903-2
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Epigenetic Discrimination: Emerging Applications of Epigenetics Pointing to the Limitations of Policies Against Genetic Discrimination
Dupras Charles, Song Lingqiao, Saulnier Katie M., Joly Yann. Epigenetic Discrimination: Emerging Applications of Epigenetics Pointing to the Limitations of Policies Against Genetic Discrimination. Front. Genet.. 2018;9:202. Available from: https://www.frontiersin.org/article/10.3389/fgene.2018.00202/full
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The Genetic Non-Discrimination Act: critical for promoting health and science in Canada
Bombard Yvonne, Heim-Myers Bev. The Genetic Non-Discrimination Act: critical for promoting health and science in Canada. CMAJ. 2018;190(19):E579-E580. Available from: http://www.cmaj.ca/lookup/doi/10.1503/cmaj.180298
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GINA at Ten and the Future of Genetic Nondiscrimination Law
Rothstein Mark A. GINA at Ten and the Future of Genetic Nondiscrimination Law. Hastings Center Report. 2018;48(3):5-7. Available from: https://onlinelibrary.wiley.com/doi/10.1002/hast.847
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Concerns about Genetic Discrimination after Regulation: A Qualitative Study of the Situation Regarding BRCA and Huntington’s Disease in Belgium
Wauters Annet, Van Hoyweghen Ine. Concerns about Genetic Discrimination after Regulation: A Qualitative Study of the Situation Regarding BRCA and Huntington’s Disease in Belgium. Laws. 2018;7(2):17. Available from: http://www.mdpi.com/2075-471X/7/2/17
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Time to End the Use of Genetic Test Results in Life Insurance Underwriting
Rothstein Mark A. Time to End the Use of Genetic Test Results in Life Insurance Underwriting. J. Law. Med. Ethics. 2018;46(3):794-801. Available from: https://www.cambridge.org/core/product/identifier/S1073110500023007/type/journal_article
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Genetics, Insurance and Professional Practice: Survey of the Australasian Clinical Genetics Workforce
Tiller Jane, Keogh Louise, Wake Samantha, Delatycki Martin, Otlowski Margaret, Lacaze Paul. Genetics, Insurance and Professional Practice: Survey of the Australasian Clinical Genetics Workforce. Frontiers in Public Health. 2018;6 Available from: https://www.frontiersin.org/article/10.3389/fpubh.2018.00333
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The Dangers of Direct-to-Consumer Genetic Testing for Alzheimer’s Disease
Lacaze Paul, Tiller Jane, Ryan Joanne. The Dangers of Direct-to-Consumer Genetic Testing for Alzheimer’s Disease. Bioethical Inquiry. 2017;14(4):585-587. Available from: https://doi.org/10.1007/s11673-017-9817-6
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Breast Cancer Risk Estimation and Personal Insurance: A Qualitative Study Presenting Perspectives from Canadian Patients and Decision Makers
Dalpe Gratien, Ngueng Feze Ida, Salman Shahad, Joly Yann, Hagan Julie, Lévesque Emmanuelle, et al. Breast Cancer Risk Estimation and Personal Insurance: A Qualitative Study Presenting Perspectives from Canadian Patients and Decision Makers. Frontiers in Genetics. 2017;8 Available from: http://journal.frontiersin.org/article/10.3389/fgene.2017.00128/full
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Comparative Approaches to Genetic Discrimination: Chasing Shadows?
Joly Yann, Feze Ida Ngueng, Song Lingqiao, Knoppers Bartha M. Comparative Approaches to Genetic Discrimination: Chasing Shadows?. Trends in Genetics. 2017;33(5):299-302. Available from: https://linkinghub.elsevier.com/retrieve/pii/S0168952517300331
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DNA Testing for Family Reunification in Canada: Points to Consider
Joly Yann, Salman Shahad, Ngueng Feze Ida, Granados Moreno Palmira, Stanton-Jean Michèle, Lacey Jacqueline, et al. DNA Testing for Family Reunification in Canada: Points to Consider. Int. Migration & Integration. 2017;18(2):391-404. Available from: http://link.springer.com/10.1007/s12134-016-0496-7
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Genetic Discrimination: A Case for a European Legislative Response?
de Paor Aisling. Genetic Discrimination: A Case for a European Legislative Response?. Eur J Health Law. 2017;24(2):135-159. Available from: https://brill.com/view/journals/ejhl/24/2/article-p135_3.xml
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Normative Approaches to Address Genetic Discrimination: Placebo or Panacea?
Joly Yann, Ngueng Feze Ida, Song Lingqiao, Knoppers Bartha Maria. Normative Approaches to Address Genetic Discrimination: Placebo or Panacea?. . 2017; Available from: https://papers.ssrn.com/abstract=2911199
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Insurance and genetic tests
Byk Christian. Insurance and genetic tests. Revue générale du droit des assurances. 2017;n° 114e7(2):97. Available from: https://www.labase-lextenso.fr/revue-generale-du-droit-des-assurances/RGA114e7
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Ancestry Testing and the Practice of Genetic Counseling
Kirkpatrick Brianne E., Rashkin Misha D. Ancestry Testing and the Practice of Genetic Counseling. J Genet Counsel. 2017;26(1):6-20. Available from: http://doi.wiley.com/10.1007/s10897-016-0014-2
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Exporting DNA – striking a balance between preventing exploitation and promoting innovation
Pepper M S. Exporting DNA – striking a balance between preventing exploitation and promoting innovation. S Afr Med J. 2017;107(2):106. Available from: http://www.samj.org.za/index.php/samj/article/view/11797
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Genetics and Insurance in Australia: Concerns around a Self-Regulated Industry
Newson Ainsley J., Tiller Jane, Keogh Louise A., Otlowski Margaret, Lacaze Paul. Genetics and Insurance in Australia: Concerns around a Self-Regulated Industry. PHG. 2017;20(4):247-256. Available from: https://www.karger.com/Article/FullText/481450
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Insurance Risk Classification in an Era of Genomics: Is a Rational Discrimination Policy Rational?
Prince Anya E.R. Insurance Risk Classification in an Era of Genomics: Is a Rational Discrimination Policy Rational?. Neb Law Rev. 2017;96(3):624-687. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6934377/
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Should Australia Ban the Use of Genetic Test Results in Life Insurance?
Tiller Jane, Otlowski Margaret, Lacaze Paul. Should Australia Ban the Use of Genetic Test Results in Life Insurance?. Frontiers in Public Health. 2017;5 Available from: https://www.frontiersin.org/article/10.3389/fpubh.2017.00330
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Genetic Discrimination in Quebec: A flexible and proactive approach to address a complex social issue
Joly Y., Dupras C., Ngueng Feze I., Song L. Genetic Discrimination in Quebec: A flexible and proactive approach to address a complex social issue. 2017. Available from: https://www.genomequebec.com/DATA/PUBLICATION/32_en~v~Genetic_Discrimination_in_Quebec_-_Policy_Brief.pdf
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Epigenetics ELSI: Darker Than You Think?
Joly Yann, So Derek, Saulnier Katie, Dyke Stephanie O. M. Epigenetics ELSI: Darker Than You Think?. Trends Genet. 2016;32(10):591-592. Available from: https://www.cell.com/trends/genetics/fulltext/S0168-9525(16)30069-5
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Global trends on fears and concerns of genetic discrimination: a systematic literature review
Wauters Annet, Van Hoyweghen Ine. Global trends on fears and concerns of genetic discrimination: a systematic literature review. J Hum Genet. 2016;61(4):275-282. Available from: https://www.nature.com/articles/jhg2015151
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Implications of direct-to-consumer whole-exome sequencing in South Africa
Lombard Zané, Baine Fiona, Krause Amanda, Lochan Anneline, Macualay Shelley, Spencer Careni, et al. Implications of direct-to-consumer whole-exome sequencing in South Africa. S Afr Med J. 2016;106(2):139. Available from: http://www.samj.org.za/index.php/samj/article/view/10534
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How Genetics Might Affect Real Property Rights
Rothstein Mark A., Rothstein Laura. How Genetics Might Affect Real Property Rights. J. Law. Med. Ethics. 2016;44(1):216-221. Available from: https://www.cambridge.org/core/product/identifier/S1073110500020866/type/journal_article
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Limiting Occupational Medical Evaluations under the Americans with Disabilities Act and the Genetic Information Nondiscrimination Act
Rothstein Mark A., Roberts Jessica, Guidotti Tee L. Limiting Occupational Medical Evaluations under the Americans with Disabilities Act and the Genetic Information Nondiscrimination Act. Am. J. Law. Med.. 2015;41(4):523-567. Available from: https://www.cambridge.org/core/product/identifier/S009885880000349X/type/journal_article
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Innovations of the Americans With Disabilities Act: Confronting Disability Discrimination in Employment
Rothstein Mark A. Innovations of the Americans With Disabilities Act: Confronting Disability Discrimination in Employment. JAMA. 2015;313(22):2221-2222. Available from: https://doi.org/10.1001/jama.2015.3417
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Perspective of Theoretical Consideration in the Text of the Article "Cloning of the Person" of the New Criminal Code of the Republic of Kazakhstan from the Position of the International and Foreign Experience of Countries of Western Europe in particular the United Kingdom: Comparative Analysis
Shalkharov Yernar Sailaubekovich, Nakipov Balgabay Isakulovich, International Kazakh Turkish University by name of K.A.Yessevi, Batyrbaev Nurlan Muhtarovich, International Kazakh Turkish University by name of K.A.Yessevi, Urazbaev Kuanyshbek Baimbetovich, et al. Perspective of Theoretical Consideration in the Text of the Article "Cloning of the Person" of the New Criminal Code of the Republic of Kazakhstan from the Position of the International and Foreign Experience of Countries of Western Europe in particular the United Kingdom: Comparative Analysis. Theoretical & Applied Science. 2015;23(03):138-145. Available from: http://www.t-science.org/arxivDOI/2015/03(23)/03(23)_24.html
Regulating Genetic Discrimination in the European Union: Pushing the EU into Unchartered Territory or Ushering in a New Genomic Era?
de Paor Aisling, Ferri Delia. Regulating Genetic Discrimination in the European Union: Pushing the EU into Unchartered Territory or Ushering in a New Genomic Era?. European Journal of Law Reform. 2015;17(1):14-32. Available from: http://www.elevenjournals.com/doi/10.5553/EJLR/138723702015017001002
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Problems of Consumer Protection Legislation in the Sphere of Medical Education System as a Course to Achieve Goal of Correct Connection Between Doctor and Patient in Kazakhstan, Central Asia (Discripting Approach)
Akmadov Shamuhamet Nurmuhamedovich, Batyrbaev Nurlan Muhtarovich, International Kazakh-Turkish University by name of H.A.Yessevy Kazakhstan, Shalkharov Yernar Sailaubekovich, International Kazakh-Turkish University by name of H.A.Yessevi. Kazakhstan. Problems of Consumer Protection Legislation in the Sphere of Medical Education System as a Course to Achieve Goal of Correct Connection Between Doctor and Patient in Kazakhstan, Central Asia (Discripting Approach). Theoretical & Applied Science. 2015;21(01):126-128. Available from: http://www.t-science.org/arxivDOI/2015/01(21)/01(21)_21.html
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Applied Aspects of Application of Insurance of Professional Responsibility of Doctor in Medical Conflicts and Affecting Mechanisms on Area of Prosecution in Kazakhstan Republic, Central Asia: Description Approach
Dusipov Erkin Shajaevich, Batyrbaev Nurlan Muhtarovich, International Kazakh-Turkish University by name of H.A.Yessevy Kazakhstan, Uderbaev Nurlybek Nurlanovich, Kazakh Medical University of Continuing Education Kazakhstan, Shalkharov Yernar Sailaubekovich, et al. Applied Aspects of Application of Insurance of Professional Responsibility of Doctor in Medical Conflicts and Affecting Mechanisms on Area of Prosecution in Kazakhstan Republic, Central Asia: Description Approach. Theoretical & Applied Science. 2015;21(01):89-93. Available from: http://www.t-science.org/arxivDOI/2015/01(21)/01(21)_16.html
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Ethical, legal and social implications of incorporating personalized medicine into healthcare
Brothers Kyle B, Rothstein Mark A. Ethical, legal and social implications of incorporating personalized medicine into healthcare. Personalized Medicine. 2015;12(1):43-51. Available from: https://www.futuremedicine.com/doi/abs/10.2217/pme.14.65
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Genetics and Personal Insurance: the Perspectives of Canadian Cancer Genetic Counselors
Lane Michelle, Ngueng Feze Ida, Joly Yann. Genetics and Personal Insurance: the Perspectives of Canadian Cancer Genetic Counselors. Journal of Genetic Counseling. 2015;24(6):1022-1036. Available from: https://onlinelibrary.wiley.com/doi/abs/10.1007/s10897-015-9841-9
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Genetic discrimination: transatlantic perspectives on the case for a European-level legal response
Genetic discrimination: transatlantic perspectives on the case for a European-level legal response. Abingdon, Oxon ; New York, NY: Routledge; 2015. Available from: https://www.routledge.com/Genetic-Discrimination-Transatlantic-Perspectives-on-the-Case-for-a-European/Quinn-Paor-Blanck/p/bo...
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Recommendations for Centres of Expertise in Rare Anaemias. The ENERCA White Book
Vives Corrons Joan-Lluis, del Mar Mañú Pereira María, Romeo-Casabona Carlos, Nicolás Pilar, Gulbis Béatrice, Eleftheriou Androulla, et al. Recommendations for Centres of Expertise in Rare Anaemias. The ENERCA White Book. Thalassemia Reports. 2014;4(3):86-90. Available from: https://www.mdpi.com/2039-4365/4/3/4878
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Genetic information, non-discrimination, and privacy protections in genetic counseling practice
Prince Anya E. R., Roche Myra I. Genetic information, non-discrimination, and privacy protections in genetic counseling practice. J Genet Couns. 2014;23(6):891-902. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4233176/
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The Genetic Information Nondiscrimination Act (GINA) of 2008
Prince Anya E.R., Watersone M. The Genetic Information Nondiscrimination Act (GINA) of 2008. In: Quinn, Gerard; de Paor, Aisling; Blanck, Peter, editors. Genetic Discrimination: Transatlantic Perspectives on the Case for a European-level Legal Response. 1st. London: Routledge; 2014. p. 300. Available from: https://www.tandfonline.com/doi/full/10.1080/09687599.2015.1075951#:~:text=non%2Ddiscrimination%20regulations.-,Genetic%20Dis...
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Genetic discrimination and insurance in Canada: Where are we now?
Nicholls Stuart, Joly Yann, Moher Ester, Little Julian. Genetic discrimination and insurance in Canada: Where are we now?. On The Risk. 2014;30:46-52. Available from: https://www.researchgate.net/publication/262138157_Genetic_discrimination_and_insurance_in_Canada_Where_are_we_now
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Can’t Always Get What you Want? Try an Indirect Route you Just Might Get What you Need: A Study on Access to Genetic Data by Canadian Life Insurers
Feze Ida, Joly Yann. Can’t Always Get What you Want? Try an Indirect Route you Just Might Get What you Need: A Study on Access to Genetic Data by Canadian Life Insurers. CPPM. 2014;12(1):56-64. Available from: http://www.eurekaselect.com/openurl/content.php?genre=article&issn=1875-6921&volume=12&issue=1&spage=56
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Life insurance: genomic stratification and risk classification
Joly Yann, Burton Hilary, Knoppers Bartha Maria, Feze Ida Ngueng, Dent Tom, Pashayan Nora, et al. Life insurance: genomic stratification and risk classification. Eur J Hum Genet. 2014;22(5):575-579. Available from: http://www.nature.com/articles/ejhg2013228
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Streitkultur and the governance of genetic testing and insurance in Germany
Lander Jonas, Van Hoyweghen Ine. Streitkultur and the governance of genetic testing and insurance in Germany. New Genetics and Society. 2014;33(1):42-59. Available from: https://www.tandfonline.com/doi/full/10.1080/14636778.2013.873336
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Genetic discrimination and life insurance: a systematic review of the evidence
Joly Yann, Ngueng Feze Ida, Simard Jacques. Genetic discrimination and life insurance: a systematic review of the evidence. BMC Med. 2013;11(1):25. Available from: http://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-11-25
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Genetic Discrimination in Employment Is Indefensible
Rothstein Mark A. Genetic Discrimination in Employment Is Indefensible. Hastings Center Report. 2013;43(6):3-4. Available from: https://onlinelibrary.wiley.com/doi/10.1002/hast.219
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Ethical, legal, and social implications of incorporating genomic information into electronic health records
Hazin Ribhi, Brothers Kyle B., Malin Bradley A., Koenig Barbara A., Sanderson Saskia C., Rothstein Mark A., et al. Ethical, legal, and social implications of incorporating genomic information into electronic health records. Genet Med. 2013;15(10):810-816. Available from: https://www.nature.com/articles/gim2013117
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Life insurance and genetic test results: a mutation carrier's fight to achieve full cover
Keogh Louise A., Otlowski Margaret F. A. Life insurance and genetic test results: a mutation carrier's fight to achieve full cover. Med. J. Aust.. 2013;199(5) Available from: https://www.mja.com.au/journal/2013/199/5/life-insurance-and-genetic-test-results-mutation-carriers-fight-achieve-full
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Harm, hype and evidence: ELSI research and policy guidance
Caulfield Timothy, Chandrasekharan Subhashini, Joly Yann, Cook-Deegan Robert. Harm, hype and evidence: ELSI research and policy guidance. Genome Medicine. 2013;5(3):21. Available from: https://doi.org/10.1186/gm425
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Personalized medicine and access to health care: potential for inequitable access?
McClellan Kelly A, Avard Denise, Simard Jacques, Knoppers Bartha M. Personalized medicine and access to health care: potential for inequitable access?. Eur J Hum Genet. 2013;21(2):143-147. Available from: http://www.nature.com/articles/ejhg2012149
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Comprehensive Protection of Genetic Information: One Size Privacy or Property Models May Not Fit All
Prince Anya. Comprehensive Protection of Genetic Information: One Size Privacy or Property Models May Not Fit All. Brooklyn Law Review. 2013;79(1) Available from: https://brooklynworks.brooklaw.edu/blr/vol79/iss1/4
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Genetic privacy: an evaluation of the ethical and legal landscape
Genetic privacy: an evaluation of the ethical and legal landscape. London: Imperial College Press; 2013. Available from: https://www.worldscientific.com/worldscibooks/10.1142/p906
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Your genes in insurance: from genetic discrimination to genomic solidarity
Van Hoyweghen Ine, Rebert Lisa. Your genes in insurance: from genetic discrimination to genomic solidarity. Personalized Medicine. 2012;9(8):871-877. Available from: https://www.futuremedicine.com/doi/10.2217/pme.12.96
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Unravelling fears of genetic discrimination: an exploratory study of Dutch HCM families in an era of genetic non-discrimination acts
Geelen Els, Horstman Klasien, Marcelis Carlo LM, Doevendans Pieter A, Van Hoyweghen Ine. Unravelling fears of genetic discrimination: an exploratory study of Dutch HCM families in an era of genetic non-discrimination acts. Eur J Hum Genet. 2012;20(10):1018-1023. Available from: http://www.nature.com/articles/ejhg201253
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Beyond the patient: The broader impact of genetic discrimination among individuals at risk of Huntington disease
Bombard Yvonne, Palin JoAnne, Friedman Jan M., Veenstra Gerry, Creighton Susan, Bottorff Joan L., et al. Beyond the patient: The broader impact of genetic discrimination among individuals at risk of Huntington disease. Am. J. Med. Genet.. 2012;159B(2):217-226. Available from: https://onlinelibrary.wiley.com/doi/10.1002/ajmg.b.32016
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Genetic discrimination: international perspectives
Otlowski M., Taylor S., Bombard Y. Genetic discrimination: international perspectives. Annu Rev Genomics Hum Genet. 2012;13:433-454. Available from: https://www.annualreviews.org/doi/abs/10.1146/annurev-genom-090711-163800
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When does an illness begin: genetic discrimination and disease manifestation
Prince Anya E. R., Berkman Benjamin E. When does an illness begin: genetic discrimination and disease manifestation. J Law Med Ethics. 2012;40(3):655-664. Available from: https://journals.sagepub.com/doi/abs/10.1111/j.1748-720X.2012.00696.x
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Factors associated with experiences of genetic discrimination among individuals at risk for huntington disease
Bombard Yvonne, Palin JoAnne, Friedman Jan M., Veenstra Gerry, Creighton Susan, Paulsen Jane S., et al. Factors associated with experiences of genetic discrimination among individuals at risk for huntington disease. Am. J. Med. Genet.. 2011;156(1):19-27. Available from: https://onlinelibrary.wiley.com/doi/10.1002/ajmg.b.31130
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Genetic discrimination in private insurance: global perspectives
Joly Yann, Braker Maria, Le Huynh Michael. Genetic discrimination in private insurance: global perspectives. New Genetics and Society. 2010;29(4):351-368. Available from: https://www.tandfonline.com/doi/full/10.1080/14636778.2010.528189
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Taming the wild life of genes by law? Genes reconfiguring solidarity in private insurance
Van Hoyweghen Ine. Taming the wild life of genes by law? Genes reconfiguring solidarity in private insurance. New Genetics and Society. 2010;29(4):431-455. Available from: https://www.tandfonline.com/doi/full/10.1080/14636778.2010.528190
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Practices and Attitudes of Australian Employers in Relation to the Use of Genetic Information: Report on a National Study
Otlowski Margaret, Stranger Mark, Taylor Sandra, Barlow-Stewart Kristine, Treloar Susan. Practices and Attitudes of Australian Employers in Relation to the Use of Genetic Information: Report on a National Study. Comparative Labor Law & Policy Journal. 2010;31(4):637-691. Available from: http://heinonline.org/hol-cgi-bin/get_pdf.cgi?handle=hein.journals/cllpj31§ion=40
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Perception, experience, and response to genetic discrimination in Huntington disease: The international RESPOND-HD study
Erwin Cheryl, Williams Janet K., Juhl Andrew R., Mengeling Michelle, Mills James A., Bombard Yvonne, et al. Perception, experience, and response to genetic discrimination in Huntington disease: The international RESPOND-HD study. Am. J. Med. Genet.. 2010;9999B:n/a-n/a. Available from: https://onlinelibrary.wiley.com/doi/10.1002/ajmg.b.31079
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In their own words: Reports of stigma and genetic discrimination by people at risk for Huntington disease in the International RESPOND-HD study
Williams Janet K., Erwin Cheryl, Juhl Andrew R., Mengeling Michelle, Bombard Yvonne, Hayden Michael R., et al. In their own words: Reports of stigma and genetic discrimination by people at risk for Huntington disease in the International RESPOND-HD study. Am. J. Med. Genet.. 2010;9999B:n/a-n/a. Available from: https://onlinelibrary.wiley.com/doi/10.1002/ajmg.b.31080
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Gina's Beauty is Only Skin Deep
Rothstein Mark A. Gina's Beauty is Only Skin Deep. Gene Watch. 2009;22(2):9-12. Available from: https://papers.ssrn.com/abstract=1519975
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Ethical implications of epigenetics research
Rothstein Mark A., Cai Yu, Marchant Gary E. Ethical implications of epigenetics research. Nat Rev Genet. 2009;10(4):224-224. Available from: https://www.nature.com/articles/nrg2562
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Verification of consumers' experiences and perceptions of genetic discrimination and its impact on utilization of genetic testing.
Barlow-Stewart Kristine, Taylor Sandra D, Treloar Susan A, Stranger Mark, Otlowski Margaret. Verification of consumers' experiences and perceptions of genetic discrimination and its impact on utilization of genetic testing.. Genetics in medicine : official journal of the American College of Medical Genetics. 2009;11(3):193-201. Available from: https://www.nature.com/articles/gim200928
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The Ghost in our Genes: Legal and Ethical Implications of Epigenetics
Rothstein Mark A., Cai Yu, Marchant Gary E. The Ghost in our Genes: Legal and Ethical Implications of Epigenetics. Health Matrix Clevel. 2009;19(1):1-62. Available from: https://asu.pure.elsevier.com/en/publications/the-ghost-in-our-genes-legal-and-ethical-implications-of-epigenet
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Keeping Your Genes Private
Rothstein Mark A. Keeping Your Genes Private. Sci Am. 2008;299(3):64-69. Available from: https://www.scientificamerican.com/article/keeping-your-genes-private
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Putting the Genetic Information Nondiscrimination Act in context
Rothstein Mark A. Putting the Genetic Information Nondiscrimination Act in context. Genetics in Medicine. 2008;10(9):655-656. Available from: https://linkinghub.elsevier.com/retrieve/pii/S1098360021030975
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European Practices of Genetic Information and Insurance: Lessons for the Genetic Information Nondiscrimination Act
Van Hoyweghen Ine, Horstman Klasien. European Practices of Genetic Information and Insurance: Lessons for the Genetic Information Nondiscrimination Act. JAMA. 2008;300(3):326. Available from: http://jama.jamanetwork.com/article.aspx?doi=10.1001/jama.2008.62
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Confidentiality, privacy, and security of genetic and genomic test information in electronic health records: points to consider
McGuire Amy L., Fisher Rebecca, Cusenza Paul, Hudson Kathy, Rothstein Mark A., McGraw Deven, et al. Confidentiality, privacy, and security of genetic and genomic test information in electronic health records: points to consider. Genet Med. 2008;10(7):495-499. Available from: https://www.nature.com/articles/gim200876
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Investigating genetic discrimination in Australia: a large-scale survey of clinical genetics clients
Taylor S., Treloar S., Barlow-Stewart K., Stranger M., Otlowski M. Investigating genetic discrimination in Australia: a large-scale survey of clinical genetics clients. Clin Genet. 2008;74(1):20-30. Available from: https://onlinelibrary.wiley.com/doi/10.1111/j.1399-0004.2008.01016.x
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Perceptions of discrimination among persons who have undergone predictive testing for Huntington's disease
Penziner Elizabeth, Williams Janet K., Erwin Cheryl, Bombard Yvonne, Wallis Anne, Beglinger Leigh J., et al. Perceptions of discrimination among persons who have undergone predictive testing for Huntington's disease. Am. J. Med. Genet.. 2008;147B(3):320-325. Available from: https://onlinelibrary.wiley.com/doi/10.1002/ajmg.b.30600
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Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease
Bombard Yvonne, Penziner Elizabeth, Suchowersky Oksana, Guttman Mark, Paulsen Jane S, Bottorff Joan L, et al. Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease. Eur J Hum Genet. 2008;16(3):279-289. Available from: http://www.nature.com/articles/5201937
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GINA, the ADA, and Genetic Discrimination in Employment
Rothstein Mark A. GINA, the ADA, and Genetic Discrimination in Employment. J Law Med Ethics. 2008;36(4):837-840. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3035561/
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Currents in Contemporary Ethics: Is GINA Worth the Wait?
Rothstein Mark A. Currents in Contemporary Ethics: Is GINA Worth the Wait?. Journal of Law, Medicine & Ethics. 2008;36(1):174-178. Available from: https://www.cambridge.org/core/journals/journal-of-law-medicine-and-ethics/article/currents-in-contemporary-ethics/AA8B630E51...
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The Use of Legal Remedies in Australia for Pursuing Allegations of Genetic Discrimination: Findings of an Empirical Study
Otlowski Margaret, Taylor Sandra, Barlowstewart Kristine, Stranger Mark, Treloar Susan. The Use of Legal Remedies in Australia for Pursuing Allegations of Genetic Discrimination: Findings of an Empirical Study. International Journal of Discrimination and the Law. 2007;9(1):3-35. Available from: https://doi.org/10.1177/135822910700900102
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Genetic ‘Risk Carriers’ and Lifestyle ‘Risk Takers’. Which Risks Deserve our Legal Protection in Insurance?
Van Hoyweghen Ine, Horstman Klasien, Schepers Rita. Genetic ‘Risk Carriers’ and Lifestyle ‘Risk Takers’. Which Risks Deserve our Legal Protection in Insurance?. Health Care Anal. 2007;15(3):179-193. Available from: https://link.springer.com/10.1007/s10728-006-0041-5
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Investigating genetic discrimination in the Australian life insurance sector: the use of genetic test results in underwriting, 1999-2003.
Otlowski Margaret, Barlow-Stewart Kristine, Taylor Sandra, Stranger Mark, Treloar Susan. Investigating genetic discrimination in the Australian life insurance sector: the use of genetic test results in underwriting, 1999-2003.. Journal of law and medicine. 2007;14(3):367-396. Available from: https://proxy.library.mcgill.ca/login?url=https://www.proquest.com/scholarly-journals/investigating-genetic-discrimination-au...
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Investigating Genetic Discrimination in Australia: Perceptions and Experiences of Clinical Genetics Service Clients regarding Coercion to Test, Insurance and Employment
Taylor Sandra, Treloar Susan, Barlow-Stewart Kristine, Otlowski Margaret, Stranger Mark. Investigating Genetic Discrimination in Australia: Perceptions and Experiences of Clinical Genetics Service Clients regarding Coercion to Test, Insurance and Employment. Australian Journal of Emerging Technologies and Society. 2007;5(2):63-83. Available from: https://espace.library.uq.edu.au/view/UQ:134802
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Consumer Experiences and Predictive Genetic Testing
Otlowski M, Skene L. Consumer Experiences and Predictive Genetic Testing. In: Stranger, M, editor. Human Biotechnology and Public Trust: Trends, Perceptions and Regulation. Centre for Law and Genetics; 2007. Available from: https://eprints.utas.edu.au/5980/
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‘Genetic Privacy, Discrimination and Insurance’
Otlowski Margaret. ‘Genetic Privacy, Discrimination and Insurance’. In: Disputes and Dilemmas in Health Law. Federation Press; 2006. Available from: https://books.google.ca/books/about/Disputes_and_Dilemmas_in_Health_Law.html?id=61JVEXzkcygC&redir_esc=y
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The Expanding Use of DNA in Law Enforcement: What Role for Privacy?
Rothstein Mark A., Talbott Meghan K. The Expanding Use of DNA in Law Enforcement: What Role for Privacy?. Journal of Law, Medicine & Ethics. 2006;34(2):153-164. Available from: https://www.cambridge.org/core/journals/journal-of-law-medicine-and-ethics/article/abs/expanding-use-of-dna-in-law-enforcemen...
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Use of Genetic Test Information in Life Insurance: An Evaluation of Different Regulatory Models
Otlowski Margaret. Use of Genetic Test Information in Life Insurance: An Evaluation of Different Regulatory Models. Journal of International Biotechnology Law. 2005;2(3):99-104. Available from: https://www.degruyter.com/document/doi/10.1515/jibl.2005.2.3.99/html
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Genetic Discrimination By Insurers As A Result Of Genetic Research And Testing: A Comparison Of National Policies
Freishtat R. J., Joly Y., Avard D., Ellenberg M., Knoppers B. M. Genetic Discrimination By Insurers As A Result Of Genetic Research And Testing: A Comparison Of National Policies. J Investig Med. 2005;53(2):S396.2-S396. Available from: https://jim.bmj.com/lookup/doi/10.2310/6650.2005.00205.52
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Knowing Your Genes
Barlow-Stewart S., Taylor S., Otlowski M. F. A. Knowing Your Genes. In: Australian Social Attitudes: The First Report. University of New South Wales Press; 2005. p. 204-219. Available from: http://ecite.utas.edu.au/37733
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Exploring the concept of genetic discrimination.
Otlowski Margaret. Exploring the concept of genetic discrimination.. Journal of bioethical inquiry. 2005;2(3):165-176. Available from: https://link.springer.com/article/10.1007/BF02448597
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Investigating genetic discrimination in Australia: opportunities and challenges in the early stages.
Taylor Sandra D, Otlowski Margaret F, Barlow-Stewart Kristine K, Treloar Susan A, Stranger Mark, Chenoweth Kellie. Investigating genetic discrimination in Australia: opportunities and challenges in the early stages.. New genetics and society. 2004;23(2):225-239. Available from: https://www.tandfonline.com/doi/abs/10.1080/1463677042000237053
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An exploration of the legal and socio-ethical implications of predictive genetic testing of children.
Otlowski Margaret. An exploration of the legal and socio-ethical implications of predictive genetic testing of children.. Australian journal of family law. 2004;18(2):147-169. Available from: https://pubmed.ncbi.nlm.nih.gov/17058338/
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Physicians, genetics and life insurance
Knoppers Bartha M., Joly Yann. Physicians, genetics and life insurance. CMAJ. 2004;170(9):1421-1423. Available from: https://www.cmaj.ca/content/170/9/1421
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Genetics and Life Insurance in Canada: Points to Consider
Knoppers Bartha Maria, Lemmens Trudo, Joly Yann, Godard Béatrice, Avard Denise, Clark Teren, et al. Genetics and Life Insurance in Canada: Points to Consider. CMAJ : Canadian Medical Association Journal. 2004;170(9) Available from: https://papyrus.bib.umontreal.ca/xmlui/handle/1866/76
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Genetics and life insurance: medical underwriting and social policy
Genetics and life insurance: medical underwriting and social policy. Cambridge, Mass: MIT Press; 2004. (Basic bioethics). Available from: https://mitpress.mit.edu/books/genetics-and-life-insurance
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Methodological considerations in the study of genetic discrimination.
Treloar Susan, Taylor Sandra, Otlowski Margaret, Barlow-Stewart Kristine, Stranger Mark, Chenoweth Kellie. Methodological considerations in the study of genetic discrimination.. Community genetics. 2004;7(4):161-168. Available from: https://www.karger.com/Article/Fulltext/82254
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Genetic information and life insurance: a ‘real’ risk?
Joly Yann, Knoppers Bartha M, Godard Béatrice. Genetic information and life insurance: a ‘real’ risk?. Eur J Hum Genet. 2003;11(8):561-564. Available from: http://www.nature.com/articles/5200998
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Genetic discrimination: Too few data
Otlowski Margaret F., Taylor Sandra D., Barlow-Stewart Kristine K. Genetic discrimination: Too few data. Eur J Hum Genet. 2003;11(1):1-2. Available from: https://www.nature.com/articles/5200910
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Genetic discrimination: meeting the challenges of an emerging issue.
Otlowski Margaret. Genetic discrimination: meeting the challenges of an emerging issue.. The University of New South Wales law journal. 2003;26(3):764-769. Available from: https://www.unswlawjournal.unsw.edu.au/article/genetic-discrimination-meeting-the-challenges-of-an-emerging-issue/
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Major study commencing into genetic discrimination in Australia.
Otlowski Margaret F, Taylor Sandra D, Barlow-Stewart Kristine K. Major study commencing into genetic discrimination in Australia.. Journal of law and medicine. 2002;10(1):41-48. Available from: https://europepmc.org/article/med/12242882
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Genetic Testing and Insurance: The Case for Regulation
Otlowski Margaret. Genetic Testing and Insurance: The Case for Regulation. Agenda. 2002;9(4):335-354. Available from: https://www.jstor.org/stable/43199221
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Australian empirical study into genetic discrimination.
Otlowski Margaret F, Taylor Sandra D, Barlow-Stewart Kristine K. Australian empirical study into genetic discrimination.. Genetics in medicine : official journal of the American College of Medical Genetics. 2002;4(5):392-395. Available from: https://www.nature.com/articles/gim200258
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Employers' use of genetic test information: is there a need for regulation
Otlowski Margaret. Employers' use of genetic test information: is there a need for regulation. Journal of Law and. 2002;8:1-39. Available from: http://ecite.utas.edu.au/24578
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What is genetic discrimination, and when and how can it be prevented?
Rothstein Mark A., Anderlik Mary R. What is genetic discrimination, and when and how can it be prevented?. Genetics in Medicine. 2001;3(5):354-358. Available from: https://www.gimjournal.org/article/S1098-3600(21)02803-3/fulltext
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Implications of genetic testing for Australian insurance law and practice
Otlowski Margaret. Implications of genetic testing for Australian insurance law and practice. Hobart, Tas: School of Law, University of Tasmania ; Faculty of Law, University of Melbourne; 2001. (Occasional paper / Centre for Law and Genetics, no. 1). Available from: https://catalogue.nla.gov.au/Record/3424850
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Privacy and Confidentiality of Genetic Information: What Rules for the New Science?
Anderlik Mary R., Rothstein Mark A. Privacy and Confidentiality of Genetic Information: What Rules for the New Science?. Annual Review of Genomics and Human Genetics. 2001;2(1):401-433. Available from: https://doi.org/10.1146/annurev.genom.2.1.401
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Avoiding Genetic Discrimination in Insurance: An Exploration of the Legality and Ethics of Precautionary Measures in Anticipation of Unfavourable Test Outcomes
Otlowski Margaret. Avoiding Genetic Discrimination in Insurance: An Exploration of the Legality and Ethics of Precautionary Measures in Anticipation of Unfavourable Test Outcomes. Monash Bioethics Review. 2001;20(1):24–32. Available from: https://philpapers.org/rec/OTLAGD
Resolving the Conundrum: Should Insurers be Entitled to Access Genetic Test Information?
Margaret Otlowski. Resolving the Conundrum: Should Insurers be Entitled to Access Genetic Test Information?. Insurance Law Journal. 2000;11:193-215.
Genetic Privacy and Confidentiality: Why They are So Hard to Protect
Rothstein Mark A. Genetic Privacy and Confidentiality: Why They are So Hard to Protect. J. Law. Med. Ethics. 1998;26(3):198-204. Available from: https://www.cambridge.org/core/product/identifier/S107311050001305X/type/journal_article
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Genetic secrets: protecting privacy and confidentiality in the genetic era
Genetic secrets: protecting privacy and confidentiality in the genetic era. New Haven: Yale University Press; 1997. Available from: https://yalebooks.yale.edu/book/9780300080636/genetic-secrets
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