The Human Genetics Commission today recommended to the Government that there should be an immediate moratorium on the use of genetic test results by insurance companies for all classes of insurance, and that this moratorium should be backed by legislation.
The moratorium should last for no less than three years, to allow time to collect data that is not currently available and to consider adequately the complex issues involved. It is essential to have a system that enjoys the confidence of the public.
The HGC has been reviewing the wider social and ethical implications of the use of genetic information in insurance at the request of Ministers. It has reached its conclusions for four reasons:
The existing system of self-regulation has failed. As the House of Commons Select Committee on Science and Technology recently observed, insurance companies are not equally observing the Association of British Insurers’ Code of Practice. There currently appears to be no satisfactory means of monitoring and enforcing the code.
There is much disagreement and uncertainty about the interpretation of many genetic tests. A clearer understanding of the possibilities and limitations of genetic testing is likely to evolve over time.
The HGC believes that there needs to be effective regulation of this area. Those who are affected by genetic conditions should not feel excluded from the normal benefits of society, which, it might be argued, includes access to insurance.
Public trust in genetic testing is essential. There is already evidence that some people are put off taking genetic tests by the fear that they may be seriously disadvantaged as a result. It is also important that public participation in valuable genetic research is not jeopardised, and we welcome the recent statements of the Association of British Insurers and others that they would seek to avoid this outcome.
The insurance industry has expressed concerns that those who know that they have a high genetic risk will deliberately buy large amounts of insurance. In order to protect insurers from significant financial loss it is proposed that very high value policies should not be covered by the moratorium. The HGC suggest that this exception should apply to policies above £500,000. This figure is arrived at on the basis of the industry’s own tables and information.
Another exception should be made in those cases where an applicant for insurance has a favourable genetic test result and the applicant chooses to reveal this to a potential insurer.
The Next Step
The HGC hopes and intends in due course to recommend a future system. It is important that it balances a number of interests including those of insurers, insured persons, and the broader community. A variety of options is available, ranging from a virtually complete ban on the use of genetic test results (as is found in many European systems) to a properly enforceable system in which limited use of certain results are allowed.
Priorities for further consideration include:
Identifying means of ensuring access to affordable insurance for those affected by a genetic condition;
Considering wider regulatory and arbitration systems to ensure the appropriate use of personal genetic information in insurance underwriting;
Initiating a debate on the wider role of private insurance in providing access to social goods.
Examining the role of insurance in a reformed welfare state, particularly with reference too issues such as long-term care.
The moratorium should not affect the current ability of insurance companies to take into account favourable (i.e. negative) results of genetic tests or to consider family history information. Family history is, of course, also genetic information and during the proposed moratorium the HGC will also address how such information is, and should be, handled by insurers in the future.
Baroness Helena Kennedy QC, Chair of the Human Genetics Commission, said:
"Our consultations have shown very real public concern on the issue of genetics and insurance. On the basis of the evidence we have received, we have profound misgivings about the industry’s handling of this information and its ability to keep its own house in order. I hope that these proposals go some way to reassure the public. They will also give the Commission the opportunity to consult further and devise an enforceable system which can enjoy the confidence of everyone.