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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  
[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  
[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  
[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  
[16] 1994 United States Genetic discrimination and screening for hemochromatosis. Hemochromatosis. No Yes 2  
[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  
[18] 1996 United States Genetic discrimination: perspectives of consumers. Conditions were not enumerated but 101 different primary genetic disorders were represented. No No 1  
[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  
[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  
[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  
[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  
[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  
[27] 2004 United States Perceptions of genetic discrimination among at-risk relatives of colorectal cancer patients. Colorectal cancer. No No 2  
[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  
[3234] 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  
[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 Study related to Otlowski et al, 2007 [3234]
[36] 2008 Canada Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease. Huntington's disease. No No 1  
[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  
[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  
[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  
[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].
  1. a1 = exist and is a concern; 2 = limited, present only marginal concern; 3 = no evidence; GD: genetic discrimination.