Background
Methods
Selection of publications
Literature search
Data extraction
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 | |
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 | |
[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]. |
Results and discussion
Scope and context
Results by region studied | All studies (33) | |||||||
---|---|---|---|---|---|---|---|---|
Conclusions on the evidence of GD | Europe (11) | US and Canada (19) | Australia (5) | Studies on single condition (n = 19)a
| Studies on multiple conditions (n = 14)a
| Validated studies (n = 8)a
| Non-validated studies (n = 25)a
| Overall (n = 33) |
(1) GD exists and is a concern
| 5 | 8 | 2 | 9 | 5 | 4 | 10 | 14 |
(2) GD exists but is rare and exceptional
| 5 | 10 | 2 | 8 | 8 | 3 | 13 | 16 |
(3) There was no evidence of GD
| 1 | 1 | 1 | 2 | 1 | 1 | 2 | 3 |
Genetic conditions investigated
Definition of genetic discrimination
Authors | Reference | Definition of genetic discrimination |
---|---|---|
Lapham et al. 1996 | [18] | Prejudicial action as perceived by the respondents that resulted from insurers' or employers' knowledge of an individual's genetic condition, carrier status, or presumed carrier status, based on observation, family history, genetic testing, or other means of gathering genetic information. |
Apse et al. 2004 | [17] | When people or organizations make unfair decisions about someone who is currently healthy based on genetic information (results of genetic testing or family history information). |
Taylor et al., 2007 | [34] | Differential treatment of a person who has no manifest symptoms of a condition or disorder and which has occurred allegedly on the basis of their genetic characteristics or makeup, either real or assumed. |
Bombard et al. 2009 | [37] | Being unfairly prevented from doing something or being treated unfairly (because of family history or genetic test results). |
Erwin et al. 2010 | [41] | The denial of rights, privileges, or opportunities or other adverse treatment based solely on genetic information, including family history or genetic test results. |
Evidence of genetic discrimination
Validation and methodological limitations
Ranking | Date | Authors | Title | Reference | Number of citations |
---|---|---|---|---|---|
1. | 1992 | PR Billings, MA Kohn, M de Cuevas, J Beckwith, JS Alper and MR Natowicz | Discrimination as a consequence of genetic testing | [13] | Web of Science: 287 Google Scholar: 436 |
2. | 1996 | EV Lapham, C Kozma and JO Weiss | Genetic discrimination: perspectives of consumers | [18] | Web of Science: 181 Google Scholar: 255 |
3. | 1996 | LN Geller, JS Alper, PR Billings, CI Barash, J Beckwith and MR Natowicz | Individual, family, and societal dimensions of genetic discrimination: a case study analysis | [17] | Web of Science: N/A Google Scholar: 127 |
4. | 2004 | M Watson, C Foster, R Eeles, D Ashley, R Davidson, J Mackay, PJ Morrison, P Hopwood, DGR Evans and Psychosocial Study Collaborators | Psychosocial impact of breast/ovarian (BRCA1/2) cancer-predictive genetic testing in a UK multi-centre clinical cohort | [29] | Web of Science: 60 Google Scholar: 92 |
5. | 1998 | L Low, S King and T Wilkie | Genetic discrimination in life insurance: empirical evidence from a cross sectional survey of genetic support groups in the United Kingdom | [4] | Web of Science: 57 Google Scholar: 99 |