Session I: clinical context of genetics in primary care

3. Genetics and insurance

Graeme Laurie

Senior Lecturer in Law, University of Edinburgh

Dr Laurie introduced the hot topic of genetics and insurance with a discussion about what kind of society we want: one in which the burden of risk (including genetic risk) is shared by the whole community, or in which individuals shoulder varying burdens depending on their individual risk.

Examples of the former, illustrating the “solidarity” model, include National Insurance payments and the funding of the NHS. Life insurance and travel insurance are two examples of the latter, reflecting the model of “mutuality”.

The debate about genetics and insurance arises from the fears of people wishing to buy insurance and from the insurance industry itself. Individuals have concerns about the privacy of their medical information, and about discrimination resulting in higher premiums or refusal to cover. The industry is concerned about increasing costs and dropping profits due to “adverse selection” if they are not to have access to the same genetic information as its customers. Adverse selection is the phenomenon of disproportionate policy purchasing by consumers whose genetic information puts them at high risk, hence leading to an increase in high payouts by the industry.

The key for both parties is access to information . However, despite the fears currently being expressed, Dr Laurie argued that there is in fact little evidence of discrimination and that family history (a form of genetic information?) has long played a part in insurance calculations. There is also discussion about how we define genetic information, and how relevant it is to actuarial calculations.

While the debate continues, the moratorium on the use of genetic tests by the insurance industry (due to end in November 2006) has provided a breathing space, but not one protected by law. Various organisations are involved in collecting data to inform policy and legal development beyond the moratorium, including the Genetics and Insurance Committee (GAIC), the Human Genetics Commission (HGC), the UK Forum on Genetics and Insurance (UKFGI), and university groups such as at Herriot-Watt University.

Dr Laurie outlined the variety of scenarios that could be adopted in the future, from allowing insurers access to all genetic/family information (with attendant concerns about privacy) to denying insurers access to any of this information. The latter situation, in which individuals’ genetic information does not influence premium levels, raises the question of whether insurance of this type should therefore be provided centrally (the solidarity model) rather than by the private sector which works on the basis of mutuality.

Consideration is also being given to whether a “risk pooling” system might be workable (where all insurance companies or policies would have a levy applied in order to fund cover for people refused cover individually).

Legal measures might include privacy protection, duty of care and anti-discrimination measures. Dr Laurie re-iterated that there are grey areas to be clarified in discussing anti-discrimination: What is meant by discrimination? What is meant by genetic information? Indeed, should genetic information be treated as exceptional when the main factor leading to exclusion from purchasing insurance is lack of financial means, and when other (non-genetic) groups do have to disclose medical circumstances that often affect their insurance premiums?