MPs warn against abuse of human genetics

Legislation is needed to prevent insurance firms and employers misusing information, says report

TOM WILKIE

Science Editor

MPs yesterday called for the setting up of a human genetics commission to prevent abuse of gene testing and to avoid discrimination against people on the grounds of what is in their genes.

Legislation is also needed to give people the right to privacy about what is written in their genes, according to a report from the Select Committee on Science and Technology, which says misuse of genetic information should be both a criminal and a civil offence.

The report is the first serious attempt by Parliament to grapple with the issues thrown up by the new science of human molecular genetics. Previous calls for regulation have come from non-governmental bodies such as the Nuffield Foundation's Council on Bioethics.

The MPs accuse the insurance industry of "undue complacency" about the possibility of genetic discrimination against those applying for life assurance. Their report says the industry should be given a year to sort itself out or Parliament should decide for it.

The report was welcomed yesterday by Alastair Kent on behalf of the Genetic Interest Group (GIG), which represents the interests of families affected by inherited disorders. Mr Kent pointed out that GIG supports the amendment tabled yesterday to the Disability Discrimination Bill which would prevent the unfair discriminatory use of genetic information by insurers and employers.

"We hope the Government will accept the amendment. It will give them a mechanism by which they can introduce legislation on insurance at the end of the one-year moratorium," Mr Kent said.

Last year, one commercial company began offering genetic tests for cystic fibrosis by post. Although it is a reputable organisation, the committee warns that there is "a very real danger that unscrupulous companies may prey on the public's fear of disease and genetic disorders and offer inappropriate tests, without adequate counselling. At present it appears impossible to prevent this".

The committee's solution is the Human Genetics Commission which would regulate medical uses of genetics and act as an adviser to the Government on other matters as the science of human genetics unfolds. To ensure public confidence, the commission should have a majority of lay-members and should hold its meetings in as open a fashion as possible.

Sir Giles Shaw, the select committee's chairman, said: "Governments would be wise to act on these matters before the event. I hope to see the Government committing itself to taking the main measures forward."

Sir Giles emphasised that genetic science held a "large prospect" of new advances in medicine but that protective measures needed to be put in place now. He believes that matters are so urgent that, rather than delay for primary legislation, it would be desirable to start up the Human Genetics Commission on a voluntary basis, in the same way that the Human Fertilisation and Embryology Authority (which regulates "test-tube baby" and infertility treatment) started as a voluntary licensing body.

Alastair Kent said: "The potential for discrimination is enormous if genetic tests are available in an unregulated way." He added that it was significant that the committee had come out so strongly against employers having access to genetic information on their workers. "As things stand, you could have the situation where people could be forced into finding out something about their health prospects that they didn't want to know."