Dismay over rejection of genetics body

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Indy Politics
TOM WILKIE

Science Editor

The Government yesterday rejected proposals for a human genetics commission with powers to prevent abuse of genetic testing and ensure the privacy of information about individuals' genetic make-up.

One expert warned that the Government's refusal to act would "positively encourage" discrimination in the workplace and in life insurance against healthy people who have a risk of developing a genetic condition later in life.

The commission was recommended by a House of Commons select committee which spent nearly a year investigating the implications of recent advances in the science of human DNA. The Government rejected all the committee's substantive recommendations.

Instead, it yesterday announced that an advisory committee would be set up within the Department of Health with narrow terms of reference. Several organisations had privately urged the Government that a woman should chair the committee because most genetic testing, at least to begin with, will be done in antenatal clinics and will affect pregnant women at risk of having a child suffering a genetic disorder.

The new committee will be chaired by the Rev Dr John Polkinghorne, president of Queen's College, Cambridge. His doctorate is in mathematical physics but he has since changed vocation to become a Church of England priest.

Alastair Kent, director of the Genetic Interest Group, which represents families afflicted by genetic disease, said: "The Government's response to the select committee report is deeply disappointing." He pointed out that "breast cancer, Alzheimer's disease and diabetes all have a genetic component".

The Disability Discrimination Act prohibits employers from discriminating against people who have symptoms of disease, Mr Kent said, but genetic predispositions had been explicitly excluded from the Bill. The Government's inaction represented an incentive for discrimination against people who have a genetic predisposition before they develop the disease.

Doctors gave evidence to the select committee last year that people are already inhibited from taking genetic tests for fear the results may be entered on medical records and they will then be refused life insurance.

The Government has refused to intervene and instead pins its hopes on informal discussions between geneticists and the insurance industry which, it said yesterday, "might" lead to "a code of practice".

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