Genetic data 'insurance fear'

People want controls on the use of genetic information

British people are keen to see genetic breakthroughs that will benefit health but do not want their employers or insurers to use the information against them.

Most of us are nervous and confused about where technology might be leading

Baroness Helena Kennedy

A survey, commissioned by a national advisory body, the Human Genetics Commission (HGC), stated that most people agree human genetics research will lead to cures for disease and healthier babies.

But it also revealed that most people have little or no confidence that regulations are keeping pace with scientific developments.

The survey of 788 members of the People's Panel, set up by the Cabinet Office, coincides with the launch of a major consultation exercise on the future use of genetic information.

Benefit not exploitation

In the preliminary survey findings, there is clear evidence that people want human genetic information to be used for supportive, rather than punitive reasons.

A national DNA database is planned

Three quarters of those questioned said insurance companies should not have access to genetic test results in order to set premiums.

However, more than a third feel that it is appropriate to allow health and life insurers to see test results before they agree to provide cover.

The consultation is due to culminate in advice to ministers in a year's time on how human genetics can be used to benefit people, and not to exploit or discriminate against individuals.

Workplace environment

The consultation will question people on a range of issues including:

• How special is genetic information compared to other types?
• Should employers have a right to know if people are prone to a particular disease?
• Should there be controls on insurers' access to genetic information?
• Should police take DNA samples from people convicted of a crime?
• Who can be entrusted with your genetic information?

Insurers have already been given the go-ahead to access test results for the gene for Huntington's Disease.

Most people (72%) are opposed to employers using genetic information to determine whether people are likely to become ill or take early retirement.

But up to 70% would be happy for an employer to have access to the information if it was used to determine whether people may be sensitive to things like chemicals in the workplace.

DNA database

There was overwhelming support for the idea of police taking DNA samples from people charged with sex offences or murder, but less than half wanted samples taken from people convicted of drink-driving or shop-lifting.

Chairman of the HGC, Baroness Helena Kennedy said: "Most of us are nervous and confused about where technology might be leading, and the potential challenges to privacy and confidentiality.

"We know from our survey that people are worried that these developments might lead to discrimination or exploitation, and are sceptical of the law's ability to keep up with human genetics."

The public consultation will continue until next March with final recommendations due to go before ministers in autumn 2001.

The HGC points out that "the potential for rapid developments in this field means that we must have in place in the UK robust fundamental principles about protection and use of genetic information."

While the consultation is under way, work will progress on plans to establish a national collection of half a million DNA samples from adult volunteers in the UK. The anonymous DNA database would be linked to information from GPs about the volunteers' health and lifestyle.

The project is being managed by the Wellcome Trust and the Medical Research Council.