BMJ 1998;317:1632-1635 ( 12 December )

General Practice

Genetic discrimination in life insurance: empirical evidence from a cross sectional survey of genetic support groups in the United Kingdom

Lawrence Low, research assistant,  Suzanne King, senior policy analyst,  Tom Wilkie, senior policy analyst. 

Unit for Policy Research in Science and Medicine, Wellcome Trust, London NW1 2BE

Correspondence to: Dr Wilkie t.wilkie{at}wellcome.ac.uk

Objectives: 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.
Design: Postal questionnaire survey.
Subjects: 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.
Main outcome measures: 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.

Key messages People who represent no adverse actuarial risk on genetic grounds report having had difficulties in obtaining life insurance Genetic information is liable to be misunderstood outside of the clinical context There seems to have been unjustified genetic discrimination by insurers in the United Kingdom Gathering representative empirical evidence on the extent of genetic discrimination is not straightforward and needs further research

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