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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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INTRODUCTION: Hereditary cancer syndromes (HCS), such as Hereditary Breast and Ovarian Cancer Syndrome (HBOC) and Lynch Syndrome (LS), represent approximately 10% of all cancers. Along with medical burdens associated with the genetic risk of developing cancer, many individuals face stigma and discrimination. Genetic discrimination refers to negative treatment, unfair profiling or harm based on genetic characteristics, manifesting as "felt" stigma (ostracization without discriminatory acts) or "enacted" stigma (experiencing discriminatory acts). This study aimed to describe concerns and experiences of genetic discrimination faced by individuals with HCS. METHODS: Semi-structured qualitative interviews were conducted with individuals with molecularly-confirmed HCS residing in Ontario, British Columbia and Newfoundland & Labrador, Canada. Purposive sampling was applied to obtain a diverse sample across demographic characteristics. Study procedures were informed by interpretive description; data were thematically analyzed using constant comparison. RESULTS: 73 participants were interviewed (39 HBOC, 34 LS; 51 females, 21 males, 1 gender-diverse; aged 25-80). Participants described multifaceted forms of genetic discrimination across healthcare, insurance, employment, and family/social settings. Participants valued the Genetic Non-Discrimination Act's protective intent, but demonstrated limited knowledge of its existence and provisions. Limited knowledge, coupled with policy constraints in non-legislatable settings and third-party use of proxy genetic information, hindered participants' ability to whistleblow or seek recourse. CONCLUSION: Our results illuminate a disconnect between intended protective effects of genetic non-discrimination legislation and ongoing genetic discrimination faced by individuals with hereditary conditions. To better support these individuals, this study encourages public outreach and knowledge translation efforts to increase awareness of non-discrimination legal protections.

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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Workplace wellness programs are an emerging avenue for health-related genetic testing, with some large employers now offering such testing to employees. Employees' knowledge and concerns regarding genetic discrimination may impact their decision-making about and uptake of workplace genetic testing (wGT). This study describes employed adults' objective knowledge of the Genetic Information Nondiscrimination Act (GINA) and evaluates how this knowledge correlates with attitudes and beliefs regarding wGT. Analyses utilized data from a large, national web-based survey of employed adults (N?=?2000; mean age?=?43?years; 51% female; 55.2% college educated). Overall, most respondents (57.3%) said they were unaware of any laws protecting against genetic discrimination. Specifically, 62.6% indicated they were not at all familiar with GINA. The primary study outcome was respondents' score on a 13-item measure assessing knowledge of basic facts about GINA. Participants had low overall GINA knowledge (M?=?4.6/13 items correct (35%), SD?=?2.9), with employees often presuming GINA offers greater legal protections than it does (e.g., 45.3% erroneously endorsed that GINA protected against discrimination in life insurance). Logistic regression analyses assessed associations between GINA knowledge and employees' demographic characteristics, prior experience with genetic testing, and attitudes regarding wGT. Variables significantly associated with GINA knowledge included higher interest in wGT (aOR?=?1.45; 95% CI: 1.20, 1.77), self-reported familiarity with GINA (aOR?=?2.02; 95% CI: 1.64, 2.50), and favorable attitudes toward wGT (aOR?=?1.92; 95% CI: 1.52, 2.44). Results indicate public knowledge of GINA remains low over 15?years after its passage. These findings highlight the need for employee education on GINA before participating in wGT, as well as broader public education on GINA's legal protections and limitations. Genetic counselors lead GINA education efforts in clinical and public settings and can play a pivotal role in ongoing public education initiatives about GINA.

“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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Introduction. The article examines the specifics and role of genetic information for insurance risk assessment in the life insurance market in Ukraine. Problem Statement. The insurance market developments of different countries are increasingly characterized by the adoption of specific regulations regarding the features and conditions of use of genetic information. Therefore, the issue of regulating the rights and obligations of all participants in insurance relations regarding the use of such information of future owners of insurance policies for underwriting in insurance requires a comprehensive solution taking into account the interests of all parties. The purpose of the research is to evaluate the necessity of application of specific regulations on the insurance market, specifically in the field of using genetic data for insurance purposes. Methods. The sources of materials were scientific publications, analytical studies, as well as legislation in the field of regulation of the use of genetic information for the assessment of insurance risks. The research paper used the following empirical methods, such as analysis, synthesis, grouping, description, comparison, theoretical generalization. Results. The results show that currently some risks exist in Ukraine: firstly, the genetic discrimination, since most life insurance companies are interested in the genetic information of policyholders, and can request it from any third parties: therefore, there is a possibility of using it to assess insurance risk; secondly, an information asymmetry, which is a consequence of greater awareness of insurance companies about the insurance risks than that of the policyholders. After all, policyholders may not inform the insurance company about all the genetic data (for example, the results of genetic studies) that describe their genetic predisposition to future changes in health. Conclusions. This study substantiated factors which confirm the relevance of introducing legislative regulation regarding the use of genetic information (including the results of genetic analyzes) for underwriting in insurance.

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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Nearly three decades ago, scientists set out on one of the largest research endeavors in modern history-mapping the human genome. The research not only sparked new technologies and genetic tests, but also concomitant concerns regarding ethical, legal, and social implications of the technologies. These developments ultimately resulted in an expanded role for genetic counselors to educate consumers about the possible consequences of receiving genetic test results. In particular, many individuals undergoing testing worry that the resulting information could be used by social actors, such as life insurers, in harmful ways. Because life insurance is regulated at the state level, there is significant variability across the United States in laws and enforcement protecting consumers' genetic information. This article reports the results of a survey of U.S. state insurance commissioners regarding regulation of genetic testing and life insurance. The survey builds on a 1992 survey conducted by Jean E. McEwen et al. It returns to current U.S. state insurance commissioners to investigate changes in the climate surrounding genetic information use and risks of misuse within the insurance industry. In their 1992 survey, McEwen et al. found that: (a) genetic testing was not yet perceived to pose a significant problem for insurance rating, (b) life insurers had quite a bit of legal freedom to require and use genetic test results, and (c) insurance commissioners had received few consumers' complaints about the use of genetic information. Twenty-seven years later, our survey finds an increase in regulation protecting genetic information in insurance, but at a pace much slower than that of advances in new DNA technologies. This lag in policy to match technology increases potential risks for consumers. Our study further reveals certain inconsistencies in the letter of state law protecting consumers' genetic information and how state insurance commissioners apply that law. The study also shows that despite empirical evidence in the literature demonstrating consumer fear about genetic discrimination, consumers do not report these concerns to their state insurance commissioner. We suggest genetic counselors are key stakeholders who can help fill current gaps between consumers and the insurance industry.

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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Resumo La posibilidad de detectar mutaciones genéticas con incidencia en la aparición de enfermedades es ya una realidad en muchos sistemas sanitarios, en los que se está experimentando una transformación desde la clásica medicina paliativa hacia una nueva medicina preventiva e individualizada, basada en la clasificación de individuos en función de su “riesgo genético”.El análisis genético es la herramienta clave en esta transformación, ya que permite determinar, cada vez con más precisión, rapidez y de manera más asequible, la presencia de factores de riesgo o incluso la futura aparición de una enfermedad.Se avanza así hacia el diagnóstico, el tratamiento y la terapia “a la carta”, diferente según el paciente o el grupo de pacientes. La genética es la ciencia que estudia estas particularidades y diferencias, de hecho, se le ha llegado a llamar la "ciencia de la desigualdad". Pero, al mismo tiempo, el análisis genético puede ser un instrumento muy útil en otros ámbitos donde interese también la valoración del riesgo, como el de la contratación de seguros. No existen publicaciones que constaten que en estos años se haya generado una situación de discriminación efectiva por razones genéticas en el ámbito de los seguros (se ha afirmado que los supuestos conocidos son anecdóticos)pero los avances en técnicas genéticas y su creciente disponibilidad, y de nuevas herramientas para el tratamiento masivo de información, hace que se mantenga abierta la reflexión y que subsista la preocupación. De hecho, en el año 2016 el Consejo de Europa publicó una Recomendación sobre el tratamiento de datos de salud con fines de seguros, incluyendo los que se obtengan de análisis genéticos. Se avanza así hacia el diagnóstico, el tratamiento y la terapia “a la carta”, diferente según el paciente o el grupo de pacientes. La genética es la ciencia que estudia estas particularidades y diferencias, de hecho, se le ha llegado a llamar la "ciencia de la desigualdad". Pero, al mismo tiempo, el análisis genético puede ser un instrumento muy útil en otros ámbitos donde interese también la valoración del riesgo, como el de la contratación de seguros. No existen publicaciones que constaten que en estos años se haya generado una situación de discriminación efectiva por razones genéticas en el ámbito de los seguros (se ha afirmado que los supuestos conocidos son anecdóticos)[1] pero los avances en técnicas genéticas y su creciente disponibilidad[2], y de nuevas herramientas para el tratamiento masivo de información, hace que se mantenga abierta la reflexión y que subsista la preocupación[3]. De hecho, en el año 2016 el Consejo de Europa publicó una Recomendación sobre el tratamiento de datos de salud con fines de seguros, incluyendo los que se obtengan de análisis genéticos. [1] William Nowlan, W., “A Rational View of Insurance and Genetic Discrimination”, Science, 2002,Vol. 297, p. 195. [2] En particular, a través de análisis directos al consumidor, como advierte Rothstein, M., “Time to End the Use of Genetic Test Results in Life Insurance Underwriting”, Journal of Law, Medicine & Ethics, 46(3), 2018, p. 795. [3] American Medical Association, Genetic discrimination, 2013, p. 1.

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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Genetic stratification approaches in personalized medicine may considerably improve our ability to predict breast cancer risk for women at higher risk of developing breast cancer. Notwithstanding these advantages, concerns have been raised about the use of the genetic information derived in these processes, outside of the research and medical health care settings, by third parties such as insurers. Indeed, insurance applicants are asked to consent to insurers accessing their medical information (implicitly including genetic) to verify or determine their insurability level, or eligibility to certain insurance products. This use of genetic information may result in the differential treatment of individuals based on their genetic information, which could lead to higher premium, exclusionary clauses or even the denial of coverage. This phenomenon has been commonly referred to as “Genetic Discrimination” (GD). In the Canadian context, where federal Bill S-201, An Act to prohibit and prevent genetic discrimination, has recently been enacted but may be subject to constitutional challenges, information about potential risks to insurability may raise issues in the clinical context. We conducted a survey with women in Quebec who have never been diagnosed with breast cancer to document their perspectives. We complemented the research with data from 14 semi-structured interviews with decision-makers in Quebec to discuss institutional issues raised by the use of genetic information by insurers. Our results provide findings on five main issues: (1) the reluctance to undergo genetic screening test due to insurability concerns, (2) insurers' interest in genetic information, (3) the duty to disclose genetic information to insurers, (4) the disclosure of potential impacts on insurability before genetic testing, and (5) the status of genetic information compared to other health data. Overall, both groups of participants (the women surveyed and the decision-makers interviewed) acknowledged having concerns about GD and reported a need for better communication tools discussing insurability risk. Our conclusions regarding concerns about GD and the need for better communication tools in the clinical setting may be transferable to the broader Canadian context.

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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In recent years, genetic research has led to the creation of screening tests capable of predicting a person’s risk for various diseases, including breast cancer and Alzheimer’s, or an individual’s response to a given drug. In addition, the latest high-throughput sequencing technologies can now be used to sequence the whole genome of a human being. Genetic tests and technologies are at the forefront of a new type of personalized medicine, whose purpose is to treat patients with greater precision based on their genetic, clinical and environmental data. The recent advent of techniques used to transfer mitochondrial DNA and edit the genome suggests that in the not-so distant future, it may be possible to modify the genome of individuals at varying stages of development to protect them from disease. The promises of genetics in health care, however, remain to be demonstrated through further research. Genetic information can also be used outside the medical context. This is the case, for example, with genealogical studies used to demonstrate biological lineage among family members or DNA testing done to prove the identity of a suspect during criminal investigations. The use of genetic information outside the context of medicine or medical research can, therefore, be a valuable asset on condition that it respects the values and fundamental rights of our society. Genetic discrimination occurs when a person is excessively profiled or treated negatively based on genetic characteristics (suspected or proven). As with other forms of discrimination involving gender, ethnicity or disability, genetic discrimination can be a source of exclusion. It can limit a person’s social and professional opportunities. When this is the case, a person’s rights and freedoms may be compromised. One thing is certain, however. Genetic discrimination leads to the psychological distress of those involved. At the moment, no major empirical study evaluating the extent of genetic discrimination in Québec has been conducted. In Canada, too, there is too little data on the subject, which further complicates matters in terms of our understanding of the problem at the provincial level. Moreover, the studies available deal with specific situations, such as life insurance coverage for people at risk of developing Huntington’s disease. No other evidence offers compelling data confirming the existence of widespread genetic discrimination. The fear of being the target of discriminatory practices based on genetics is, however, pervasive in Canada. It stands to reason that this reflects the views of people in Québec as well. The purpose of this Policy Brief is to provide policymakers with recent and contextualized data on genetic discrimination and offer recommendations for follow-up to help them develop a Québec prevention strategy.

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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The Community added value of Centres of Expertise (CoE) and European Reference Networks (ERN) is particularly high for rare diseases (RD) due to the rarity of these conditions, which implies both a small number of patients and scarcity of expertise within a single country. Gathering expertise at the European level is therefore, paramount in order to ensure equal access to accurate information, appropriate and timely diagnosis and high quality clinical care and follow up for patients with rare diseases. This applies particularly to rare anaemias due to the high number of different rare diseases that constitute this group. In this context, the European Network for Rare and Congenital Anaemias (ENERCA), co-financed by the European Commission, was created in 2002 with the aim of prevention and management of rare anaemias (RA) and the development and promotion of policies to improve the well-being of European Union citizens. The ENERCA White Book is a position paper, developed as a deliverable of the ENERCA (phase 3) project that intends to contribute to the creation of a ERN in RA (ERN-RA) by preparation of the recommendations and, in particular, the definition of the criteria that CoE, local centres (LC) and their interrelations have to fulfil as healthcare providers. It has been nourished by all the activities that have been performed over the past ten years within the ENERCA framework. The White Book is addressed to authorities in charge of the identifying CoE, as an essential requirement for the official recognition of the ERN, to European and national health authorities, Healthcare centres and health professionals, as well as to all other stakeholders interested in RA. It is also addressed to the patients, as a way to empower their community in this process. One particular characteristic of the White Book is the integration of the three main aspects of a CoE: (a) ethical and legal frameworks to ensure the non-discrimination and non-stigmatisation of rare disease patients across Europe, within their sphere of competencies; (b) clinical and laboratory frameworks for defining technical and quality criteria including scope, general and disease specific elements currently defined as technical and professional standards for the diagnosis, treatment and follow-up of patients with RA; and (c) the expectations patients have of CoE. Conceived as a working tool directed to a broad range of stakeholders, the White book has been designed and structured to be comprehensible even to non-technical and /or non-professional audiences. The reader will find an up-to-date description and epidemiological information on RA as well as the European Union background policies for defining CoE and ERN-RA. A working group was created with experts of different profiles, known as the European Working Group on Rare Anaemias (EGRA). In order to achieve its objectives, the methodology used by EGRA, was characterised by three main principles: Interdisciplinary, European coverage, and evidence-based principles. Work has been developed into four sequential steps: 1. Analysis of the current situation of RA in Europe by healthcare professionals in order to identify the most relevant issues that have to be addressed by a centre in order for it to be recommended as CoE. 2. Preparation of questionnaires to perform surveys on how the relevant issues identified in step 1 can be translated into practical recommendations. 3. Analysis of the questionnaire results by face to face meetings, feedback and consensus evaluation, and 4. Preparation of a report on ENERCA policy recommendations for CoE. This report is presented in a user-friendly format, easy to understand and available through the ENERCA website (www.enerca.org). Several important conclusions can be drawn from the ENERCA White Book, including the importance of laboratories involved in the diagnosis of RA, patient oriented and multidisciplinary care at the CoE, the need for coordination and cooperation within and outside the centre, the provision of information to patients and health professionals and the involvement of public authorities at the national and European levels. Official recognition of this structure and assurance of its long term sustainability will only be achieved if public authorities work hand by hand with both professionals experts in different disciplines and patients. Finally, the ENERCA White book aims to be a practical tool for health authorities of Member States (MS) that are preparing their national directory of formally designated CoE. For this, it is important that MS authorities recognise RA as an important health component to be included within the National Plans or Actions for Rare Diseases.

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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Concerns about genetic discrimination (GD) have been reported since the 1980s. The potential chilling effects of GD both in the clinical and research settings have prompted the adoption of a myriad of laws and moratoria on access to genetic data in Europe and the United States. Recent studies in Canada, Australia and Germany concerning patients and family members at-risk for Huntington’s disease have raised concerns about GD and life insurance. However, broader empirical evidence on the occurrence of GD (ex. involving complex genetic disorders in the context of personalized medicine) remains scarce. This study identifies the information that Canadian life insurers request in their primary proposal forms. 21 forms from different insurers, available online, were assessed to determine 1) whether insurers are explicitly or specifically requesting genetic information from applicants, 2) whether insurers are using open-ended questions in a way that may compel the broad disclosure of personal information, and 3) what type of authorization is requested from applicants to enable insurers to verify the accuracy and completeness of the information submitted on the form. Our findings show that Canadian life insurers do not explicitly request that applicants disclose their genetic test results on insurance questionnaires. However, their use of broad terminology and open questions, provide them access to a wealth of medical information (including genetic test results) in addition to family history of diseases. Both the breadth of information currently being collected through their proposal forms and the lack of standardization across insurance groups raise concerns about the equity, transparency and overall coherence of the process. Although the findings have to be interpreted in the context of the inherent limitations of this type of study, they carry important consequences for the translation of personalized medicine which requires and generates a wealth of genomic information for patients.

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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There is currently a significant level of debate in Australia and other jurisdictions about the appropriateness of intervention in the private insurance market to regulate the use of genetic test information by insurers. Whilst the issue has arisen most directly with the emergence of genetic testing, concerns appear to be extending to the use of any predictive genetic information for risk assessment purposes. Indeed, questions are currently being raised about insurers' use of family history information which is a source of information insurers have historically always had access to. In response to concerns about the use of genetic information, in August 2000, the Commonwealth Government established an Inquiry into the Protection of Human Genetic Information to be jointly conducted by the Australian Law Reform Commission and the Australian Health Ethics Committee of the National Health and Medical Research Council. Pursuant to this Inquiry, a Discussion Paper has recently been released which contains proposals for reform, amongst other things, covering the circumstances in which insurers can use genetic test information (Australian Law Reform Commission, 2002). The aim of this paper is to look at some of the problems associated with insurers' reliance on genetic information for underwriting purposes and to present the case for regulation (although not necessarily through legislative means). The main source of contention in relation to insurers' use of genetic information appears to lie in the field of predictive genetic test information: that is, in the situation where the individual is asymptomatic and the testing indicates that he/she is predisposed to developing a genetically related disease in the future. Predominantly, this contention is caused by limitations of the predictive value of such tests — usually only indicating that a person is at increased risk of developing a genetic disease, there being no certainty about this issue. It should be made clear from the outset that the scope of this paper is limited to those forms of voluntary insurance for which underwriting on health grounds is undertaken, such as life insurance, sickness and critical illness insurance: in the Australian context at least, this does not include health insurance for which a system of community rating is statutorily mandated pursuant to the National Health Act 1953 (Cth). Further, it should be noted that the paper is written primarily from a legal perspective. Clearly, economic efficiency implications would also need to be fully considered by policy makers.

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

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The advent of forensic DNA databases: It’s time to agree on some international governance principles!

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Analyzing Discrimination Based on Genetic Information: Review, Critique and Proposal

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The Key Features of a Genetic Nondiscrimination Policy A Delphi Consensus Statement

A proposal for an inclusive working definition of genetic discrimination to promote a more coherent debate

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The Genetic Information Nondiscrimination Act and workplace genetic testing: Knowledge and perceptions of employed adults in the United States

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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

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Australian researcher's perspectives on the Australian industry-led moratorium on genetic tests in life insurance

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Discrimination Based on Genetic Information in South Asia: An Exploratory Study of Constitutions and Relevant Laws

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Future implications of polygenic risk scores for life insurance underwriting

The Regulation of Health-Related Direct-to-Consumer Genetic Tests in South Africa by the Medicines and Related Substances Act

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Genetic testing and actuarial science

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Does Ukraine need a specific regulation related to the applying of genetic information for risk assessment in insurance?

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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

Parents' attitudes towards research involving genome sequencing of their healthy children: a qualitative study

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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

Still using genetic data? A comparative review of Canadian life insurance application forms before and after the GNDA

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Canada's Genetic Non-Discrimination Act: False Security for Customers of Direct-to-Consumer Genetic Testing Services

In Their Own Image: Ethical Implications of the Rise of Digital Twins/Clones/Simulacra in Healthcare

Canadian Healthcare Professionals’ Views and Attitudes toward Risk-Stratified Breast Cancer Screening

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Is legislation to prevent genetic discrimination necessary in Japan? An overview of the current policies and public attitudes

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Community concerns about genetic discrimination in life insurance persist in Australia: A survey of consumers offered genetic testing

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Disclosing Privacy and Discrimination Protections in Informed Consent

The Slippery Slope of Prenatal Testing for Social Traits

Frozen and forgotten: What are South African fertility clinics to do with surplus cryopreserved embryos once their patients lose interest?

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Defusing the legal and ethical minefield of epigenetic applications in the military, defense, and security context

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

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Health care implications of the Genetic Non-Discrimination Act: Protection for Canadians’ genetic information

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Health professionals’ views and experiences of the Australian moratorium on genetic testing and life insurance: A qualitative study

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Privacy and the Genetic Community

The goldilocks conundrum: Disclosing discrimination risks in informed consent

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Auditing the Editor: A Review of Key Translational Issues in Epigenetic Editing

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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?

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Navigating the ethical maze of genomics in Canada’s military

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Toward a Framework for Assessing Privacy Risks in Multi-Omic Research and Databases

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The persistent lack of knowledge and misunderstanding of the Genetic Information Nondiscrimination Act (GINA) more than a decade after passage

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The omics of our lives: practices and policies of direct-to-consumer epigenetic and microbiomic testing companies

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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)

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Responsible use of polygenic risk scores in the clinic: potential benefits, risks and gaps

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The Genetic Discrimination Observatory: confronting novel issues in genetic discrimination

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Three decades of genetic privacy: a metaphoric journey

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Genetic Testing in Insurance Implications for Non-EU Insurance Markets as a Part of the European Integration Process

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A step forward, but still inadequate: Australian health professionals’ views on the genetics and life insurance moratorium

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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

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Genetic discrimination: introducing the Asian perspective to the debate

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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

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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

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Study protocol: the Australian genetics and life insurance moratorium—monitoring the effectiveness and response (A-GLIMMER) project

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Erring In Law and In Fact: The Supreme Court of Canada’s Reference Re Genetic Non-Discrimination Act

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Monitoring the genetic testing and life insurance moratorium in Australia: a national research project

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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

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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

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Genetic discrimination views in online discussion forums: Perspectives from Canadian forumites

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Les enjeux québécois de la discrimination génétique : l’expérience d’un forum en ligne

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The Problems with Patchwork: State Approaches to Regulating Insurer Use of Genetic Information

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A survey of U. S. state insurance commissioners concerning genetic testing and life insurance: Redux at 27

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Banning Genetic Discrimination in Life Insurance — Time to Follow Florida’s Lead

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Looking Beyond GINA: Policy Approaches to Address Genetic Discrimination

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Denmark

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Establishing the International Genetic Discrimination Observatory

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Human rights in the postgenomic era: Challenges and opportunities arising with epigenetics

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Genomics: data sharing needs an international code of conduct

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Genetic discrimination by Australian insurance companies: a survey of consumer experiences

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Proxy Discrimination in the Age of Artificial Intelligence and Big Data

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Predictive Health Information and Employment Discrimination under the ADA and GINA

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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

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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?

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Réflexions éthiques et juridiques sur la modification génétique constitutionnelle des cellules germinales humaines

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Ethical and legal challenges of artificial intelligence-driven healthcare

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Obtencion y Utilizacion de Datos Geneticos en la Contratacion de Seguros. La Dificil Concrecion de la Prohibicion de Discriminacion

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The law of genetic privacy: applications, implications, and limitations

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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)

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Potential (mis)use of epigenetic age estimators by private companies and public agencies: human rights law should provide ethical guidance

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Genetic testing and insurance in Australia.

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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

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Genetic testing and insurance in Australia

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Personlig medicin - en udfordring for patienters rettigheder?

System of Legal Regulation of Operations Related to Genome Maneuvers

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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

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ASSAf consensus study on the ethical, legal and social implications of genetics and genomics in South Africa

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How are genetic test results being used by Australian life insurers?

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China: concurring regulation of cross-border genomic data sharing for statist control and individual protection

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Epigenetic Discrimination: Emerging Applications of Epigenetics Pointing to the Limitations of Policies Against Genetic Discrimination

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The Genetic Non-Discrimination Act: critical for promoting health and science in Canada

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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

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Time to End the Use of Genetic Test Results in Life Insurance Underwriting

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Genetics, Insurance and Professional Practice: Survey of the Australasian Clinical Genetics Workforce

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The Dangers of Direct-to-Consumer Genetic Testing for Alzheimer’s Disease

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Breast Cancer Risk Estimation and Personal Insurance: A Qualitative Study Presenting Perspectives from Canadian Patients and Decision Makers

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Comparative Approaches to Genetic Discrimination: Chasing Shadows?

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DNA Testing for Family Reunification in Canada: Points to Consider

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Genetic Discrimination: A Case for a European Legislative Response?

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Normative Approaches to Address Genetic Discrimination: Placebo or Panacea?

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Insurance and genetic tests

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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

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Genetics and Insurance in Australia: Concerns around a Self-Regulated Industry

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Insurance Risk Classification in an Era of Genomics: Is a Rational Discrimination Policy Rational?

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Should Australia Ban the Use of Genetic Test Results in Life Insurance?

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Genetic Discrimination in Quebec: A flexible and proactive approach to address a complex social issue

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Epigenetics ELSI: Darker Than You Think?

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Global trends on fears and concerns of genetic discrimination: a systematic literature review

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Implications of direct-to-consumer whole-exome sequencing in South Africa

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How Genetics Might Affect Real Property Rights

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Limiting Occupational Medical Evaluations under the Americans with Disabilities Act and the Genetic Information Nondiscrimination Act

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Innovations of the Americans With Disabilities Act: Confronting Disability Discrimination in Employment

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Regulating Genetic Discrimination in the European Union: Pushing the EU into Unchartered Territory or Ushering in a New Genomic Era?

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Ethical, legal and social implications of incorporating personalized medicine into healthcare

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Genetics and Personal Insurance: the Perspectives of Canadian Cancer Genetic Counselors

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Genetic discrimination: transatlantic perspectives on the case for a European-level legal response

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Recommendations for Centres of Expertise in Rare Anaemias. The ENERCA White Book

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Genetic information, non-discrimination, and privacy protections in genetic counseling practice

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The Genetic Information Nondiscrimination Act (GINA) of 2008

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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

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Life insurance: genomic stratification and risk classification

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Streitkultur and the governance of genetic testing and insurance in Germany

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Genetic discrimination and life insurance: a systematic review of the evidence

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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

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Life insurance and genetic test results: a mutation carrier's fight to achieve full cover

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Harm, hype and evidence: ELSI research and policy guidance

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Personalized medicine and access to health care: potential for inequitable access?

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Comprehensive Protection of Genetic Information: One Size Privacy or Property Models May Not Fit All

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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

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Unravelling fears of genetic discrimination: an exploratory study of Dutch HCM families in an era of genetic non-discrimination acts

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Beyond the patient: The broader impact of genetic discrimination among individuals at risk of Huntington disease

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Genetic discrimination: international perspectives

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When does an illness begin: genetic discrimination and disease manifestation

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Factors associated with experiences of genetic discrimination among individuals at risk for huntington disease

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Genetic discrimination in private insurance: global perspectives

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Taming the wild life of genes by law? Genes reconfiguring solidarity in private insurance

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Practices and Attitudes of Australian Employers in Relation to the Use of Genetic Information: Report on a National Study

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Perception, experience, and response to genetic discrimination in Huntington disease: The international RESPOND-HD study

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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

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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.

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The Ghost in our Genes: Legal and Ethical Implications of Epigenetics

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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

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European Practices of Genetic Information and Insurance: Lessons for the Genetic Information Nondiscrimination Act

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Confidentiality, privacy, and security of genetic and genomic test information in electronic health records: points to consider

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Investigating genetic discrimination in Australia: a large-scale survey of clinical genetics clients

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Perceptions of discrimination among persons who have undergone predictive testing for Huntington's disease

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Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease

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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?

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The Use of Legal Remedies in Australia for Pursuing Allegations of Genetic Discrimination: Findings of an Empirical Study

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Genetic ‘Risk Carriers’ and Lifestyle ‘Risk Takers’. Which Risks Deserve our Legal Protection in Insurance?

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Investigating genetic discrimination in the Australian life insurance sector: the use of genetic test results in underwriting, 1999-2003.

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Investigating Genetic Discrimination in Australia: Perceptions and Experiences of Clinical Genetics Service Clients regarding Coercion to Test, Insurance and Employment

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Consumer Experiences and Predictive Genetic Testing

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‘Genetic Privacy, Discrimination and Insurance’

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The Expanding Use of DNA in Law Enforcement: What Role for Privacy?

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Use of Genetic Test Information in Life Insurance: An Evaluation of Different Regulatory Models

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Genetic Discrimination By Insurers As A Result Of Genetic Research And Testing: A Comparison Of National Policies

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Knowing Your Genes

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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.

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An exploration of the legal and socio-ethical implications of predictive genetic testing of children.

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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

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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.

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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.

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Major study commencing into genetic discrimination in Australia.

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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.

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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?

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Implications of genetic testing for Australian insurance law and practice

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Privacy and Confidentiality of Genetic Information: What Rules for the New Science?

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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

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

Lire le résumé

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

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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

Lire le résumé

The advent of forensic DNA databases: It’s time to agree on some international governance principles!

Lire le résumé

Analyzing Discrimination Based on Genetic Information: Review, Critique and Proposal

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The Key Features of a Genetic Nondiscrimination Policy A Delphi Consensus Statement

A proposal for an inclusive working definition of genetic discrimination to promote a more coherent debate

Lire le résumé

The Genetic Information Nondiscrimination Act and workplace genetic testing: Knowledge and perceptions of employed adults in the United States

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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

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Australian researcher's perspectives on the Australian industry-led moratorium on genetic tests in life insurance

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Discrimination Based on Genetic Information in South Asia: An Exploratory Study of Constitutions and Relevant Laws

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Future implications of polygenic risk scores for life insurance underwriting

The Regulation of Health-Related Direct-to-Consumer Genetic Tests in South Africa by the Medicines and Related Substances Act

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Genetic testing and actuarial science

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Does Ukraine need a specific regulation related to the applying of genetic information for risk assessment in insurance?

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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

Parents' attitudes towards research involving genome sequencing of their healthy children: a qualitative study

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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

Still using genetic data? A comparative review of Canadian life insurance application forms before and after the GNDA

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Canada's Genetic Non-Discrimination Act: False Security for Customers of Direct-to-Consumer Genetic Testing Services

In Their Own Image: Ethical Implications of the Rise of Digital Twins/Clones/Simulacra in Healthcare

Canadian Healthcare Professionals’ Views and Attitudes toward Risk-Stratified Breast Cancer Screening

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Is legislation to prevent genetic discrimination necessary in Japan? An overview of the current policies and public attitudes

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Community concerns about genetic discrimination in life insurance persist in Australia: A survey of consumers offered genetic testing

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Disclosing Privacy and Discrimination Protections in Informed Consent

The Slippery Slope of Prenatal Testing for Social Traits

Frozen and forgotten: What are South African fertility clinics to do with surplus cryopreserved embryos once their patients lose interest?

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Defusing the legal and ethical minefield of epigenetic applications in the military, defense, and security context

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

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Health care implications of the Genetic Non-Discrimination Act: Protection for Canadians’ genetic information

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Health professionals’ views and experiences of the Australian moratorium on genetic testing and life insurance: A qualitative study

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Privacy and the Genetic Community

The goldilocks conundrum: Disclosing discrimination risks in informed consent

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Auditing the Editor: A Review of Key Translational Issues in Epigenetic Editing

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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?

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Navigating the ethical maze of genomics in Canada’s military

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Toward a Framework for Assessing Privacy Risks in Multi-Omic Research and Databases

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The persistent lack of knowledge and misunderstanding of the Genetic Information Nondiscrimination Act (GINA) more than a decade after passage

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The omics of our lives: practices and policies of direct-to-consumer epigenetic and microbiomic testing companies

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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)

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Responsible use of polygenic risk scores in the clinic: potential benefits, risks and gaps

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The Genetic Discrimination Observatory: confronting novel issues in genetic discrimination

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Three decades of genetic privacy: a metaphoric journey

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Genetic Testing in Insurance Implications for Non-EU Insurance Markets as a Part of the European Integration Process

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A step forward, but still inadequate: Australian health professionals’ views on the genetics and life insurance moratorium

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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

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Genetic discrimination: introducing the Asian perspective to the debate

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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

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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

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Study protocol: the Australian genetics and life insurance moratorium—monitoring the effectiveness and response (A-GLIMMER) project

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Erring In Law and In Fact: The Supreme Court of Canada’s Reference Re Genetic Non-Discrimination Act

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Monitoring the genetic testing and life insurance moratorium in Australia: a national research project

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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

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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

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Genetic discrimination views in online discussion forums: Perspectives from Canadian forumites

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Les enjeux québécois de la discrimination génétique : l’expérience d’un forum en ligne

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The Problems with Patchwork: State Approaches to Regulating Insurer Use of Genetic Information

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A survey of U. S. state insurance commissioners concerning genetic testing and life insurance: Redux at 27

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Banning Genetic Discrimination in Life Insurance — Time to Follow Florida’s Lead

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Looking Beyond GINA: Policy Approaches to Address Genetic Discrimination

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Denmark

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Establishing the International Genetic Discrimination Observatory

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Human rights in the postgenomic era: Challenges and opportunities arising with epigenetics

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Genomics: data sharing needs an international code of conduct

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Genetic discrimination by Australian insurance companies: a survey of consumer experiences

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Proxy Discrimination in the Age of Artificial Intelligence and Big Data

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Predictive Health Information and Employment Discrimination under the ADA and GINA

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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

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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?

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Réflexions éthiques et juridiques sur la modification génétique constitutionnelle des cellules germinales humaines

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Ethical and legal challenges of artificial intelligence-driven healthcare

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Obtencion y Utilizacion de Datos Geneticos en la Contratacion de Seguros. La Dificil Concrecion de la Prohibicion de Discriminacion

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The law of genetic privacy: applications, implications, and limitations

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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)

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Potential (mis)use of epigenetic age estimators by private companies and public agencies: human rights law should provide ethical guidance

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Genetic testing and insurance in Australia.

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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

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Genetic testing and insurance in Australia

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Personlig medicin - en udfordring for patienters rettigheder?

System of Legal Regulation of Operations Related to Genome Maneuvers

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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

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ASSAf consensus study on the ethical, legal and social implications of genetics and genomics in South Africa

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How are genetic test results being used by Australian life insurers?

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China: concurring regulation of cross-border genomic data sharing for statist control and individual protection

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Epigenetic Discrimination: Emerging Applications of Epigenetics Pointing to the Limitations of Policies Against Genetic Discrimination

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The Genetic Non-Discrimination Act: critical for promoting health and science in Canada

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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

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Time to End the Use of Genetic Test Results in Life Insurance Underwriting

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Genetics, Insurance and Professional Practice: Survey of the Australasian Clinical Genetics Workforce

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The Dangers of Direct-to-Consumer Genetic Testing for Alzheimer’s Disease

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Breast Cancer Risk Estimation and Personal Insurance: A Qualitative Study Presenting Perspectives from Canadian Patients and Decision Makers

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Comparative Approaches to Genetic Discrimination: Chasing Shadows?

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DNA Testing for Family Reunification in Canada: Points to Consider

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Genetic Discrimination: A Case for a European Legislative Response?

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Normative Approaches to Address Genetic Discrimination: Placebo or Panacea?

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Insurance and genetic tests

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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

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Genetics and Insurance in Australia: Concerns around a Self-Regulated Industry

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Insurance Risk Classification in an Era of Genomics: Is a Rational Discrimination Policy Rational?

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Should Australia Ban the Use of Genetic Test Results in Life Insurance?

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Genetic Discrimination in Quebec: A flexible and proactive approach to address a complex social issue

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Epigenetics ELSI: Darker Than You Think?

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Global trends on fears and concerns of genetic discrimination: a systematic literature review

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Implications of direct-to-consumer whole-exome sequencing in South Africa

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How Genetics Might Affect Real Property Rights

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Limiting Occupational Medical Evaluations under the Americans with Disabilities Act and the Genetic Information Nondiscrimination Act

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Innovations of the Americans With Disabilities Act: Confronting Disability Discrimination in Employment

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Regulating Genetic Discrimination in the European Union: Pushing the EU into Unchartered Territory or Ushering in a New Genomic Era?

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Ethical, legal and social implications of incorporating personalized medicine into healthcare

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Genetics and Personal Insurance: the Perspectives of Canadian Cancer Genetic Counselors

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Genetic discrimination: transatlantic perspectives on the case for a European-level legal response

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Recommendations for Centres of Expertise in Rare Anaemias. The ENERCA White Book

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Genetic information, non-discrimination, and privacy protections in genetic counseling practice

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The Genetic Information Nondiscrimination Act (GINA) of 2008

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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

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Life insurance: genomic stratification and risk classification

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Streitkultur and the governance of genetic testing and insurance in Germany

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Genetic discrimination and life insurance: a systematic review of the evidence

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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

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Life insurance and genetic test results: a mutation carrier's fight to achieve full cover

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Harm, hype and evidence: ELSI research and policy guidance

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Personalized medicine and access to health care: potential for inequitable access?

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Comprehensive Protection of Genetic Information: One Size Privacy or Property Models May Not Fit All

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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

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Unravelling fears of genetic discrimination: an exploratory study of Dutch HCM families in an era of genetic non-discrimination acts

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Beyond the patient: The broader impact of genetic discrimination among individuals at risk of Huntington disease

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Genetic discrimination: international perspectives

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When does an illness begin: genetic discrimination and disease manifestation

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Factors associated with experiences of genetic discrimination among individuals at risk for huntington disease

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Genetic discrimination in private insurance: global perspectives

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Taming the wild life of genes by law? Genes reconfiguring solidarity in private insurance

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Practices and Attitudes of Australian Employers in Relation to the Use of Genetic Information: Report on a National Study

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Perception, experience, and response to genetic discrimination in Huntington disease: The international RESPOND-HD study

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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

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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.

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The Ghost in our Genes: Legal and Ethical Implications of Epigenetics

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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

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European Practices of Genetic Information and Insurance: Lessons for the Genetic Information Nondiscrimination Act

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Confidentiality, privacy, and security of genetic and genomic test information in electronic health records: points to consider

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Investigating genetic discrimination in Australia: a large-scale survey of clinical genetics clients

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Perceptions of discrimination among persons who have undergone predictive testing for Huntington's disease

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Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease

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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?

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The Use of Legal Remedies in Australia for Pursuing Allegations of Genetic Discrimination: Findings of an Empirical Study

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Genetic ‘Risk Carriers’ and Lifestyle ‘Risk Takers’. Which Risks Deserve our Legal Protection in Insurance?

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Investigating genetic discrimination in the Australian life insurance sector: the use of genetic test results in underwriting, 1999-2003.

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Investigating Genetic Discrimination in Australia: Perceptions and Experiences of Clinical Genetics Service Clients regarding Coercion to Test, Insurance and Employment

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Consumer Experiences and Predictive Genetic Testing

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‘Genetic Privacy, Discrimination and Insurance’

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The Expanding Use of DNA in Law Enforcement: What Role for Privacy?

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Use of Genetic Test Information in Life Insurance: An Evaluation of Different Regulatory Models

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Genetic Discrimination By Insurers As A Result Of Genetic Research And Testing: A Comparison Of National Policies

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Knowing Your Genes

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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.

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An exploration of the legal and socio-ethical implications of predictive genetic testing of children.

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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

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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

Lire le résumé

Methodological considerations in the study of genetic discrimination.

Lire le résumé

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

Lire le résumé

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

Lire le résumé

Genetic discrimination: meeting the challenges of an emerging issue.

Lire le résumé

Major study commencing into genetic discrimination in Australia.

Lire le résumé

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

Lire le résumé

Australian empirical study into genetic discrimination.

Lire le résumé

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

Lire le résumé

What is genetic discrimination, and when and how can it be prevented?

Lire le résumé

Implications of genetic testing for Australian insurance law and practice

Lire le résumé

Privacy and Confidentiality of Genetic Information: What Rules for the New Science?

Lire le résumé

Avoiding Genetic Discrimination in Insurance: An Exploration of the Legality and Ethics of Precautionary Measures in Anticipation of Unfavourable Test Outcomes

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

Lire le résumé

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

Lire le résumé

Publications

"Should I let them know I have this?": Multifaceted genetic discrimination and limited awareness of legal protections amongst individuals with hereditary cancer syndromes

The advent of forensic DNA databases: It’s time to agree on some international governance principles!

Analyzing Discrimination Based on Genetic Information: Review, Critique and Proposal

The Key Features of a Genetic Nondiscrimination Policy A Delphi Consensus Statement

A proposal for an inclusive working definition of genetic discrimination to promote a more coherent debate

The Genetic Information Nondiscrimination Act and workplace genetic testing: Knowledge and perceptions of employed adults in the United States

“Uninsurable because of a genetic test”: a qualitative study of consumer views about the use of genetic test results in Australian life insurance

Australian researcher's perspectives on the Australian industry-led moratorium on genetic tests in life insurance

Discrimination Based on Genetic Information in South Asia: An Exploratory Study of Constitutions and Relevant Laws

Future implications of polygenic risk scores for life insurance underwriting

The Regulation of Health-Related Direct-to-Consumer Genetic Tests in South Africa by the Medicines and Related Substances Act

Genetic testing and actuarial science

Does Ukraine need a specific regulation related to the applying of genetic information for risk assessment in insurance?

Canada’s Genetic Non-Discrimination Act has only had a limited impact on the use of genetic information by life insurers

Parents' attitudes towards research involving genome sequencing of their healthy children: a qualitative study

Should secondary pharmacogenomic variants be actively screened and reported when diagnostic genome-wide sequencing is performed in a child?

P892: “Should I let them know I have this?”: Concerns and experiences of genetic discrimination amongst individuals with hereditary cancer syndromes

Still using genetic data? A comparative review of Canadian life insurance application forms before and after the GNDA

Canada's Genetic Non-Discrimination Act: False Security for Customers of Direct-to-Consumer Genetic Testing Services

In Their Own Image: Ethical Implications of the Rise of Digital Twins/Clones/Simulacra in Healthcare

Canadian Healthcare Professionals’ Views and Attitudes toward Risk-Stratified Breast Cancer Screening

Is legislation to prevent genetic discrimination necessary in Japan? An overview of the current policies and public attitudes

Community concerns about genetic discrimination in life insurance persist in Australia: A survey of consumers offered genetic testing

Disclosing Privacy and Discrimination Protections in Informed Consent

The Slippery Slope of Prenatal Testing for Social Traits

Frozen and forgotten: What are South African fertility clinics to do with surplus cryopreserved embryos once their patients lose interest?

Defusing the legal and ethical minefield of epigenetic applications in the military, defense, and security context

GATTACA is still pertinent 25 years later

Genetic discrimination still casts a large shadow in 2022

Researcher perspectives on ethics considerations in epigenetics: an international survey

Health care implications of the Genetic Non-Discrimination Act: Protection for Canadians’ genetic information

Health professionals’ views and experiences of the Australian moratorium on genetic testing and life insurance: A qualitative study

Privacy and the Genetic Community

The goldilocks conundrum: Disclosing discrimination risks in informed consent

Auditing the Editor: A Review of Key Translational Issues in Epigenetic Editing

Genetic Discrimination in Access to Life Insurance: Does Ukrainian Legislation Offer Sufficient Protection against the Adverse Consequences of the Genetic Revolution to Insurance Applicants?

Navigating the ethical maze of genomics in Canada’s military

Toward a Framework for Assessing Privacy Risks in Multi-Omic Research and Databases

The persistent lack of knowledge and misunderstanding of the Genetic Information Nondiscrimination Act (GINA) more than a decade after passage

The omics of our lives: practices and policies of direct-to-consumer epigenetic and microbiomic testing companies

Genetic testing and insurance implications: Surveying the US general population about discrimination concerns and knowledge of the Genetic Information Nondiscrimination Act (GINA)

Responsible use of polygenic risk scores in the clinic: potential benefits, risks and gaps

The Genetic Discrimination Observatory: confronting novel issues in genetic discrimination

Three decades of genetic privacy: a metaphoric journey

Genetic Testing in Insurance Implications for Non-EU Insurance Markets as a Part of the European Integration Process

A step forward, but still inadequate: Australian health professionals’ views on the genetics and life insurance moratorium

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

Genetic discrimination: introducing the Asian perspective to the debate

Genetic discrimination in life insurance: a human rights issue

Anti-selection & Genetic Testing in Insurance: An Interdisciplinary Perspective

Normalising life at risk of Huntington’s disease. A qualitative study of backgrounds and coping strategies of fears of genetic discrimination

Study protocol: the Australian genetics and life insurance moratorium—monitoring the effectiveness and response (A-GLIMMER) project

Erring In Law and In Fact: The Supreme Court of Canada’s Reference Re Genetic Non-Discrimination Act

Monitoring the genetic testing and life insurance moratorium in Australia: a national research project

Women's Views on Multifactorial Breast Cancer Risk Assessment and Risk-Stratified Screening: A Population-Based Survey from Four Provinces in Canada

Can Genetic Nondiscrimination Laws Save Lives?

Digital Health, Artificial Intelligence and Accessibility to Health Care in Denmark

Genetic discrimination views in online discussion forums: Perspectives from Canadian forumites

Les enjeux québécois de la discrimination génétique : l’expérience d’un forum en ligne

The Problems with Patchwork: State Approaches to Regulating Insurer Use of Genetic Information

A survey of U. S. state insurance commissioners concerning genetic testing and life insurance: Redux at 27

Banning Genetic Discrimination in Life Insurance — Time to Follow Florida’s Lead

Looking Beyond GINA: Policy Approaches to Address Genetic Discrimination

Denmark

Establishing the International Genetic Discrimination Observatory

Human rights in the postgenomic era: Challenges and opportunities arising with epigenetics

Genomics: data sharing needs an international code of conduct

Genetic discrimination by Australian insurance companies: a survey of consumer experiences

Proxy Discrimination in the Age of Artificial Intelligence and Big Data

Predictive Health Information and Employment Discrimination under the ADA and GINA

L’utilisation des tests génétiques dans le domaine de l’assurance en droit français et européen : une affaire d’assurance et de politique publique

Regulating the Use of Genetic Testing by Insurers and Employers in the Province of Quebec: Is the Genetic Non-Discrimination Act Really Necessary?

Réflexions éthiques et juridiques sur la modification génétique constitutionnelle des cellules germinales humaines

Ethical and legal challenges of artificial intelligence-driven healthcare

Obtencion y Utilizacion de Datos Geneticos en la Contratacion de Seguros. La Dificil Concrecion de la Prohibicion de Discriminacion

The law of genetic privacy: applications, implications, and limitations

Is Genetic Discrimination Back on the Radar? A Commentary on the Recent Court of Appeal Reference Decision on the Genetic Non- Discrimination Act (GNDA)

Potential (mis)use of epigenetic age estimators by private companies and public agencies: human rights law should provide ethical guidance

Genetic testing and insurance in Australia.