Table 1 Revised studies.
From: Genetic discrimination and life insurance: a systematic review of the evidence
Reference | Date | Scope | Title | Genetic conditions | Study specific to life insurance | Validation process provided | Conclusions on GD evidencea | Additional comments/existing policies |
|---|---|---|---|---|---|---|---|---|
[12] | 1991 | United Kingdom | Cholesterol screening and life assurance. | Familial hypercholesterolemia. | Yes | No | 1 | Â |
[13] | 1992 | Canada, United States | Discrimination as a consequence of genetic testing. | A variety of genetic conditions including Huntington's disease, Friedreich ataxia, Charcot-Marie-Tooth, hemochromatosis, phenylketonuria and others. | No | No | 1 | Â |
[14] | 1992 | United States | A survey of state insurance commissioners concerning genetic testing and life insurance. | Spina bifida, Huntington's disease, cystic fibrosis, breast cancer, coronary artery disease and sickle cell anemia. | Yes | No | 2 | Â |
[15] | 1993 | United States | A survey of medical directors of life insurance companies concerning use of genetic information. | Spina bifida, Huntington's disease, cystic fibrosis, breast cancer, coronary artery disease, and sickle cell anemia. | Yes | Yes | 1 | Â |
[16] | 1994 | United States | Genetic discrimination and screening for hemochromatosis. | Hemochromatosis. | No | Yes | 2 | Â |
[17] | 1996 | United States | Individual, family, and societal dimensions of genetic discrimination: a case study analysis. | Huntington's disease, phenylketonuria, hemochromatosis, and mucopolysaccharidoses. | No | Yes | 2 | Â |
[18] | 1996 | United States | Genetic discrimination: perspectives of consumers. | Conditions were not enumerated but 101 different primary genetic disorders were represented. | No | No | 1 | Â |
[4] | 1998 | United Kingdom | Genetic discrimination in life insurance: empirical evidence from a cross sectional survey of genetic support groups in the United Kingdom. | Cystic fibrosis, Huntington's disease, Marfan syndrome, muscular dystrophy, myotonic dystrophy, neurofibromatosis and tuberous sclerosis. | Yes | No | 2 | Concordat and moratorium on genetics and insurance |
[19] | 1998 | United States | Health, life and disability insurance and hereditary non-polyposis colorectal cancer. | Non-polyposis colorectal cancer. | No | No | 2 | Â |
[20] | 1998 to 1999 | Canada, United States | "Genetic discrimination": results of a survey of genetics professionals, primary care physicians, patients and public. | Conditions were not enumerated. | No | No | 2 | Â |
[21] | 2000 | Europe | Insurance considerations for individuals with a high risk of breast cancer in Europe: some recommendations. | Various conditions, including breast and ovarian cancer, Von Hippel-Lindau syndrome and hereditary non-polyposis colon cancer. | No | No | 2 | Some of the countries included in the study had adopted laws or policies |
[22] | 2000 | Norway | Health, life and disability insurance and hereditary risk for breast or colorectal cancer. | Breast and colorectal cancer. | No | No | 2 | Act of 5 December 2003 No. 100 relating to the application of biotechnology in human medicine |
[23] | 2001 | Australia | Genetic discrimination in Australia. | Various genetic conditions, including breast and ovarian cancer, inherited bowel cancer (familial adenomatous polyposis), inherited bowel cancer (hereditary non-polyposis colorectal cancer), familial melanoma, rare cancer syndrome, familial early-onset Alzheimer disease, Huntington's disease, rare late-onset neurodegenerative disorders (spinocerebellar ataxia), hemochromatosis, familial high cholesterol (hyperlipidemia), neuromuscular disorders, nervous system disorder (Charcot-Marie-Tooth disease), prion disease (Creutzfeldt-Jakob disease), connective tissue disorder (Marfan syndrome) and myotonic dystrophy. | No | No | 1 | Â |
[24] | 2002 | Netherlands | Getting insurance after genetic screening on familial hypercholesterolemia; the need to educate both insurers and the public to increase adherence to national guidelines in the Netherlands. | Familial hypercholesterolemia. | Yes | No | 1 | The Act on Medical Examinations (1998) |
[25] | 2003 | United States | Life insurance and breast cancer risk assessment: adverse selection, genetic testing decisions, and discrimination. | Breast cancer. | Yes | No | 3 | Â |
[26] | 2003 | United States | Insurance, employment, and psychosocial consequences of a diagnosis of hereditary hemochromatosis in subjects without end organ damage. | Hemochromatosis. | No | Yes | 1 | Â |
[27] | 2004 | United States | Perceptions of genetic discrimination among at-risk relatives of colorectal cancer patients. | Colorectal cancer. | No | No | 2 | Â |
[28] | 2004 | United Kingdom | Effect of statin treatment for familial hypercholesterolaemia on life assurance: results of consecutive surveys in 1990 and 2002. | Familial hypercholesterolemia. | Yes | No | 3 | Concordat and moratorium on genetics and insurance Follow-up study to [12] |
[29] | 2004 | United Kingdom | Psychosocial impact of breast/ovarian (BRCA1/2) cancer-predictive genetic testing in a UK multi-centre clinical cohort. | Breast and ovarian cancer. | No | No | 1 | Concordat and moratorium on genetics and insurance |
[30] | 2007 | United Kingdom | Predictive genetic testing for BRCA1/2 in a UK clinical cohort: three-year follow-up. | Breast and ovarian cancer. | No | No | 1 | Concordat and moratorium on genetics and insurance Three- year follow-up study to [29] |
[31] | 2007 | Canada, United States | Genetic screening for iron overload: no evidence of discrimination at 1 year. | Hemochromatosis. | No | Yes | 2 | Â |
2007 to 2009 | Australia | (1) Investigating genetic discrimination in Australia: perceptions and experiences of clinical genetics service clients regarding coercion to test, insurance and employment. (2) Investigating genetic discrimination in Australia: a large-scale survey of clinical genetics clients. (3) Verification of consumers' experiences and perceptions of genetic discrimination and its impact on utilization of genetic testing. | Hereditary hemochromatosis; inherited predisposition to blood clots (hereditary thrombophilia); hereditary breast and ovarian cancers; hereditary bowel cancer (familial adenomatous polyposis and hereditary non-polyposis colon cancer; familial melanoma; rare syndromes such as multiple endocrine neoplasia, Von Hippel-Lindau syndrome; neurodegenerative conditions (spino-cerebellar ataxia; Huntington's disease; early-onset Alzheimer disease; motor neuron disease; prion disease); familial hypercholesterolemia; familial hypertrophic cardiomyopathy; hereditary hypertension; hereditary emphysema (for example, α-1 antitrypsin deficiency); adult polycystic kidney disease and 'other'. | No | Yes | 1 | All three publications relate to the same study | |
[35] | 2007 | Australia | The use of legal remedies in Australia for pursuing allegations of genetic discrimination: findings of an empirical study. | No particular genetic condition was sought after but case result pertained to sickle cell. | No | Yes | 3 | Â |
[3] | 2007 | Australia | Investigating genetic discrimination in the Australian life insurance sector: use of genetic test results in underwriting 1999-2003. | No particular genetic condition was sought after but results concerned: hereditary hemochromatosis, Huntington's disease, breast and ovarian cancer, cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy, colorectal cancer, hereditary non-polyposis colorectal cancer, familial adenomatous polyposis, thrombophilia factor V (Leiden) mutation, prothrombin gene mutation, Charcot-Marie-Tooth disease, Marfan syndrome, myotonic dystrophy, multiple endocrine neoplasia, polycystic kidney disease, and spinocerebellar ataxia. | Yes | No | 2 | |
[36] | 2008 | Canada | Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease. | Huntington's disease. | No | No | 1 | Â |
[37] | 2009 | Canada | Perceptions of genetic discrimination among people at risk for Huntington's disease: a cross sectional survey. | Huntington's disease. | No | No | 1 | Â |
[38] | 2009 | Austria, Germany, United States | "A slap in the face". An exploratory study of genetic discrimination in Germany. | Huntington's disease. | No | Yes | 1 | Austria, Gene Technology Act of 1995 Germany, Law on Genetic Diagnostic, 2009 |
[39] | 2009 | United States | Survey of unaffected BRCA and mismatch repair (MMR) mutation positive individuals. | BRCA. | No | No | 2 | Â |
[40] | 2010 | Netherlands | Obtaining insurance after DNA diagnostics: a survey among hypertrophic cardiomyopathy mutation carriers. | Hypertrophic cardiomyopathy. | No | No | 2 | The Act on Medical Examinations (1998) |
[41] | 2010 | Australia, Canada, United States | Perception, experience, and response to genetic discrimination in Huntington disease: the international RESPOND-HD study. | Huntington's disease. | No | No | 2 | Australia, 2008 amendment to the Disability Discrimination Act US, Genetic Information Nondiscrimination Act of 2008 (GINA) |
[42] | 2010 | United States | Views of discrimination among individuals confronting genetic disease. | Huntington's Disease, breast cancer, and Alpha-1 antitrypsin deficiency. | No | No | 2 | US, Genetic Information Nondiscrimination Act of 2008 (GINA) |
[43] | 2012 | Canada | Beyond the patient: the broader impact of genetic discrimination among individuals at risk of Huntington disease. | Huntington's disease. | No | No | 1 | Â |
[44] | 2012 | Netherlands | Improved access to life insurance after genetic diagnosis of familial hypercholesterolaemia: cross-sectional postal questionnaire study. | Familial hypercholesterolemia. | Yes | No | 2 | The Act on Medical Examinations (1998) Follow-up to [24]. |