Genetic discrimination in life insurance: empirical evidence from a cross sectional survey of genetic support groups in the United Kingdom.
OBJECTIVE
To gather empirical evidence on any discrimination based on genetic information shown by the insurance industry in the United Kingdom and to assess how society is likely to handle future genetic information from tests for polygenic multifactorial conditions.


METHODS
Postal questionnaire survey.


METHODS
Sample (n=7000) of members from seven British support groups for families with genetic disorders and a representative sample (n=1033) of the general public who answered questions on applying for life insurance as part of an omnibus survey.


METHODS
Subjects were asked about their experiences with insurers, the medical profession, employers, and social services. Experiences with insurers are reported here.


RESULTS
Altogether 33.4% of the study group had problems when applying for life insurance compared with 5% of applicants in the omnibus survey. Thirteen per cent of study respondents from subgroups who represented no adverse actuarial risk on genetic grounds reported that their treatment by insurers seemed to represent unjustified genetic discrimination.


CONCLUSIONS
Life insurers may not be operating a consistent policy for assessing genetic information or acting in accord with the actuarial risks brought to them. The inconsistency suggests error rather than a corporate policy of discrimination based on genetic characteristics. Any future proposals for genetic testing for common or multifactorial disorders should be examined carefully.
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Unit for Policy Research in Science and Medicine, Wellcome Trust, London NW1 2BE.
King
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Wilkie
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D017668:Age of Onset; D035061:Control Groups; D003430:Cross-Sectional Studies; D030342:Genetic Diseases, Inborn / Q000191:economics* / Q000235:genetics; D030661:Genetic Privacy; D006579:Heterozygote; D006801:Humans; D015273:Insurance Selection Bias; D007352:Insurance, Life / Q000706:statistics & numerical data*; D010375:Pedigree; D011287:Prejudice; D018570:Risk Assessment; D011795:Surveys and Questionnaires; D006113:United Kingdom