Table 1

Revised studies.

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

[32-34]

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 [32-34]

[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].


a1 = exist and is a concern; 2 = limited, present only marginal concern; 3 = no evidence; GD: genetic discrimination.

Joly et al. BMC Medicine 2013 11:25   doi:10.1186/1741-7015-11-25

Open Data