FR
The color scale is indicative of the number of studies carried out in a given country, not of the incidence of genetic discrimination. An integrated quantitative analysis of studies was not possible due to very substantial differences between methodologies used and research questions.
Sometimes, several manuscripts refer to a single empirical study. They were only counted as one to avoid any misrepresentation.
Many (17 and +) Several (7 to 16) Few (4 to 6) Minimal (1 to 3) No study
Help us publish a high quality world view! If you notice a mistake, or wish to bring to our attention new empirical studies, please contact us.
Full Reference (Short Reference)
Countries		 Full Text
Alper J, Geller L, Barash C, Billings P, Laden V, Natowicz M: Genetic discrimination and screening for hemochromatosis. J Public Health Policy. 1994, 15: 345-358. 10.2307/3342910. (Alper et al 1994)
    United States 		View
Apse KA, Biesecker BB, Giardiello FM, Fuller BP, Bernhardt BA: Perceptions of genetic discrimination among at-risk relatives of colorectal cancer patients. Genet Med. 2004, 6: 510-516. (Apse et al 2004)
    United States 		View
Armstrong K, Weber B, FitzGerald G, Hershey J, Pauly M, Lemaire J, Subramanian K, Asch D: Life insurance and breast cancer risk assessment: adverse selection, genetic testing decisions, and discrimination. Am J Med Genet A. 2003, 120A: 359-364. 10.1002/ajmg.a.20025. (Armstrong et al 2003)
    United States 		View
Barlow-Stewart K, Keays D: Genetic discrimination in Australia. J L Med. 2001, 8: 250-262. (Barlow-Stewart & Keays 2001)
    Austria
Barlow-Stewart K, Liepins M, Doble A, Otlowski MFA: How Are Genetic Test Results Being Used by Australian Life Insurers? Eur J Hum Genet. 2018, 26(9): 1248-56. (Barlow-Stewart et al 2018)
    Australia 		View
Barlow-Stewart K, Taylor SA, Stranger M, Otlowski M: Verification of consumers' experiences and perceptions of genetic discrimination and its impact on utilization of genetic testing. Genet Med. 2009, 11: 193-201. 10.1097/GIM.0b013e318194ee75. (Barlow-Stewart et al 2009)
    Australia 		View
Billings P, Khon M, De Cuevas M, Beckwith J, Alper J, Natowicz M: Discrimination as a consequence of genetic testing. Am J Hum Genet. 1992, 50: 476-482. (Billings et al 1992)
    United States
    Canada 		View
Bombard Y, Palin J, Friedman JM, Veenstra G, Creighton S, Bottorff JL, Hayden MR, The Canadian Respond-HD Collaborative Reseach Group: Beyond the patient: the broader impact of genetic discrimination among individuals at risk of Huntington disease. Am J Med Genet B Neuropsychia Genet. 2012, 159B: 217-226. 10.1002/ajmg.b.32016. (Bombard et al 2012)
    Canada 		View
Bombard Y, Penziner E, Suchowersky O, Guttman M, Paulsen JS, Bottorff JL, Hayden MR: Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease. Eur J Hum Genet. 2008, 16: 279-289. 10.1038/sj.ejhg.5201937. (Bombard et al 2008)
    Canada 		View
Bombard Y, Veenstra G, Friedman JM, Creighton S, Currie L, Paulsen JS, Bottorff JL, Hayden MR, TCR-HCR Group: Perceptions of genetic discrimination among people at risk for Huntington's disease: a cross sectional survey. BMJ. 2009, 338: b2175-10.1136/bmj.b2175. (Bombard et al 2009)
    Canada 		View
Christiaans I, Kok TM, Langen I, Birnie E, Bonsel G, Wilde A, Smets E: Obtaining insurance after DNA diagnostics: a survey among hypertrophic cardiomyopathy mutation carriers. Eur J Hum Genet. 2010, 18: 251-253. 10.1038/ejhg.2009.145. (Christiaans et al 2010)
    Netherlands 		View
Erwin C, Williams JK, Juhl AR, Mengeling M, Mills JA, Bombard Y, Hayden MR, Quaid K, Shoulson I, Taylor S, Paulsen JS, I-RESPOND-HD Investigators of the Huntington Study Group: Perception, experience, and response to genetic discrimination in Huntington disease: the international RESPOND-HD study. Am J Med Genet B Neuropsychia Genet. 2010, 153B: 1081-1093. (Erwin et al 2010)
    Australia
    Canada
    United States 		View
Foster C, Watson M, Eeles R, Ashley S, Davidson R, Mackay J, Morrison PJ, Hopwood P, Evans D, Psychosocial Study Collaborators: Predictive genetic testing for BRCA1/2 in a UK clinical cohort: three-year follow-up. Br J Cancer. 2007, 96: 718-724. 10.1038/sj.bjc.6603610. (Foster et al 2007)
    United Kingdom 		View
Geller L, Alper J, Billings P, Barash C, Beckwith J, Natowicz M: Individual, family, and societal dimensions of genetic discrimination: a case study analysis. Sci Eng Ethics. 1996, 2: 71-88. 10.1007/BF02639319. (Geller et al 1996)
    United States 		View
Goh AM, Chiu E, Yastrubetskaya O, Erwin C, Williams JK, Juhl AR, Paulsen JS: Perception, Experience, and Response to Genetic Discrimination in Huntington's Disease: The Australian Results of The International RESPOND-HD Study. Genet Test Mol Biomarkers. 2013, 17(2): 115-21. 10.1089/gtmb.2012.0288. (Goh et al 2013)
    Australia 		View
Hall M, Barton J, Adams P, McLaren C, Reiss J, Castro O, Ruggiero A, Acton R, Power T, Bent T: Genetic screening for iron overload: no evidence of discrimination at 1 year. J Fam Pract. 2007, 56: 829-834. (Hall et al 2007)
    Canada
    United States 		View
Huijgen R, Homsma S, Hutten B, Kindt I, Vissers M, Kastelein J, van Rijckevorsel J: Improved access to life insurance after genetic diagnosis of familial hypercholesterolaemia: cross-sectional postal questionnaire study. Eur J Hum Genet. 2012, 20: 722-728. 10.1038/ejhg.2012.5. (Huijgen et al 2012)
    United Kingdom 		View
Keogh LA, Otlowski MFA: Life Insurance and Genetic Test Results: A Mutation Carrier's Fight to Achieve Full Cover. Med J Aust. 2013, 199(5): 363-366. 10.5694/mja13.10202. (Keogh & Otlowski 2013)
    Australia 		View
Klitzman R: Views of discrimination among individuals confronting genetic disease. J Genet Couns. 2010, 19: 68-83. 10.1007/s10897-009-9262-8. (Klitzman, 2010)
    United States 		View
Lapham EV, Kozma C, Weiss JO: Genetic discrimination: perspectives of consumers. Science. 1996, 274: 621-624. 10.1126/science.274.5287.621. (Lapham et al 1996)
    United States 		View
Lemke T: 'A slap in the face'. An exploratory study of genetic discrimination in Germany. Genomics, Society and Policy. 2009, 5: 22-39. (Lemke 2009)
    Austria
    Germany
    United States 		View
Low L, King S, Wilkie T: Genetic discrimination in life insurance: empirical evidence from a cross sectional survey of genetic support groups in the United Kingdom. BMJ.1998, 317:1632-35. (Low et al 1998)
    United Kingdom 		View
Marang-van de Mheen P, van Maarle M, Stouthard M: Getting insurance after genetic screening on familial hypercholesterolaemia; the need to educate both insurers and the public to increase adherence to national guidelines in the Netherlands. J Epidemiol Community Health. 2002, 56: 145-147. 10.1136/jech.56.2.145. (Marang-van de Mheen et al 2002)
    Netherlands 		View
McEwen JE, McCarthy K, Reilly PR: A survey of medical directors of life insurance companies concerning use of genetic information. Am J Hum Genet. 1993, 55: 33-45. (McEwen et al 1993)
    United States 		View
McEwen JE, McCarthy K, Reilly PR: A survey of state insurance commissioners concerning genetic testing and life insurance. Am J Hum Genet. 1992, 51: 785-792. (McEwen et al 1992)
    United States 		View
McKinnon W, Banks KC, Skelly J, Kohlmann W, Bennett R, Shannon K, Larson-Haidle J, Ashakaga T, Weitzel JN, Wood M: Survey of unaffected BRCA and mismatch repair (MMR) mutation positive individuals. Fam Cancer. 2009, 8: 363-369. 10.1007/s10689-009-9248-6. (McKinnon et al 2009)
    United States 		View
Mohammed S, Lim Z, Dean PH, Potts JE, Tang JN, Etheridge SP, Lara A, Husband P, Sherwin ED, Ackerman MJ, Sanatani S: Genetic Insurance Discrimination in Sudden Arrhythmia Death Syndromes: Empirical Evidence From a Cross-Sectional Survey in North America. Circ Cardiovasc Genet. 2017, 10(1). 10.1161/CIRCGENETICS.116.001442. (Mohammed et al 2017)
    United States
    Canada 		View
Mutoh K, Sakuri T: The status of utilization of personal genetic information in the society and a survey of the literacy among the general public: A report of a specially commissioned project by the Ministry of Health, Labor and Welfare. 2017. (Mutoh et al 2017)
    Japan 		View
Neil HA, Hammond T, Mant D, Humphries SE: Effect of statin treatment for familial hypercholesterolaemia on life assurance: results of consecutive surveys in 1990 and 2002. BMJ. 2004, 328: 500-501. 10.1136/bmj.328.7438.500. (Neil et al 2004)
    United Kingdom 		View
Neil HA, Mant D: Cholesterol screening and life assurance. BMJ. 1991, 302: 891-893. 10.1136/bmj.302.6781.891. (Neil & Mant 1991)
    United Kingdom 		View
Norum J, Tranebjaerg L: Health, life and disability insurance and hereditary risk for breast or colorectal cancer. Acta Oncol. 2000, 39: 189-193. 10.1080/028418600430752. (Norum & Tranebjaerg 2000)
    Norway 		View
Otlowski MFA, Stranger MJA, Taylor S, Barlow-Stewart K, Trealoar S: Investigating genetic discrimination in Australia: perceptions and experiences of clinical genetics service clients regarding coercion to test, insurance and employment. Australia Journal of Emerging Technologies and Society. 2007, 5: 63-83. (Otlowski et al 2007 (1))
    Australia 		View
Otlowski MFA, Stranger MJA, Taylor S, Barlow-Stewart K, Trealoar S: The use of legal remedies in Australia for pursuing allegations of genetic discrimination: findings of an empirical study. Int J Discrim Law. 2007, 9: 3-35. 10.1177/135822910700900102. (Otlowski et al 2007 (2))
    Australia 		View
Rodriguez-Bigas MA, Vasen HF, O'Malley L, Rosenblatt MJ, Farell C, Weber TK, Petrelli NJ: Health, life and disability insurance and hereditary nonpolyposis colorectal cancer. Am J Med Genet. 1998, 62: 736-737. (Rodriguez-Bigas et al 1998)
    United States 		View
Shaheen NJ, Lawrence LB, Bacon BR, Barton JC, Barton NH, Galanko J, Martin CF, Burnett CK, Sandler RS: Insurance, employment, and psychosocial consequences of a diagnosis of hereditary hemochromatosis in subjects without end organ damage. Am J Gastroenterol. 2003, 98: 1175-1180. 10.1111/j.1572-0241.2003.07405.x. (Shaheen et al 2003)
    United States 		View
Rachel A. Smith, Alan Sillars, Ryan P. Chesnut, and Xun Zhu: Investigating Married Adults' Communal Coping with Genetic Health Risk and Perceived Discrimination. 2018, 85:2 Commun Monogr 181. (Smith, Rachel A et al. 2018)
    United States 		View
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: 20-30. 10.1111/j.1399-0004.2008.01016.x. (Taylor et al 2008)
    Australia 		View
Tiller J, Keogh L, Wake S, Delatycki M, Otlowski MFA, Lacaze P: Genetics, Insurance and Professional Practice: Survey of the Australasian Clinical Genetics Workforce. Front Public Health. 2018, 6: 333. 10.3389/fpubh.2018.00333. (Tiller et al 2018)
    Australia
    New Zealand 		View
Watson M, Foster C, Eeles R, Eccles DM, Ashley S, Davidson R, Mackay J, Morrison PJ, Hopwood P, Evans DG, Psychosocial Study Collaborators: Psychosocial impact of breast/ovarian (BRCA1/2) cancer-predictive genetic testing in a UK multi-centre clinical cohort. Br J Cancer. 2004, 91: 1787-1794. 10.1038/sj.bjc.6602207. (Watson et al 2004)
    United Kingdom 		View
Wertz DC: "Genetic discrimination": results of a survey of genetics professionals, primary care physicians, patients and public. Health Law Rev. 1999, 7: 7-8. (Wertz 1999)
    Canada
    United States 		View
Wertz, Dorothy C & John C Fletcher. “Privacy, Discrimination, and Public Health” in Genetics and Ethics in Global Perspective International Library of Ethics, Law, and the New Medicine 63. (Wertz & Fletcher 2004)
    Australia
    Belgium
    Canada
    France
    Germany
    Italy
    Netherlands
    Spain
    United Kingdom     United States 		View

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