Call to limit use of genetic data

September 20, 1996

The United Kingdom should follow the example of countries such as Belgium, France, Austria and Norway and introduce a temporary moratorium on any requirement to disclose genetic information as the price of life insurance, according to a Cambridge University academic.

Onora O'Neill, principal of Newnham College, is expected to call for the measure next week at a Royal Society conference on the financial implications of human genetics.

In a wide-ranging speech on the ethical issues arising out of genetic screening and testing, she will argue that it is not "inevitable nor desirable" that people with adverse genetic traits should have their access to life insurance jeopardised.

The availability of genetic data may make it possible to address questions about future health more directly, but "this must be a matter of public policy and not the inadvertent result of commercial pressures. We need informed political thought and public debate on the issue", she adds.

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Dr O'Neill will say that actuarial "fairness", the notion that it is fair to charge insurance premiums proportionate to an individual's risk, should not be used to decide whether or not an individual has access to life insurance. The notion of actuarial "fairness" is uncontroversial in areas such as motor insurance.

Dr O'Neill will argue that available information on genetic factors is often too little to determine an individual's level of risk, especially life expectancy, more accurately than using non-genetic information.

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Even when an individual's genetically determined risk level is relatively clear, it may either show itself as a current medical condition or it may be clear that death will occur at a stage of life when neither life nor employment insurance are important.

Also at the Royal Society conference, Gerald Dworkin of King's College, London, will discuss whether there should be legal property rights associated with genes.

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