The Hindu : International : Warning over misuse of genetic data

Online edition of India's National Newspaper
Sunday, May 16, 2004

International

International

Warning over misuse of genetic data

By Ian Sample

LONDON, MAY 15. The British Government's genetics advisers, the Human Genetics Commission, is considering proposals for a law to prevent people being discriminated against on the basis of their genetic make-up.

The proposed legislation is designed to prevent the emergence of a genetic underclass, where people find themselves rejected by employers and unable to get life insurance, as a result of having genetic tests for medical conditions.

The proposal comes from Sir John Sulston, the Nobel prize-winning scientist who led Britain's effort to unravel the three billion letter sequence of the human genetic code at the Sanger Institute in Cambridge, England. Professor Sulston, who sits on the Human Genetics Commission, has asked the committee to back his call for a tough mandate on genetic equity to prevent medical data from tests being misused by companies.

The proposal appears in a consultation document passed to members of the commission this week. In an interview with the London-based Guardian newspaper, Prof. Sulston said: ``What we have to establish, right across the board, is the right for people to be treated equally, regardless of their genetic make-up. We can't just keep on fudging the issue.''

The proposal was submitted with the backing of John Harris, professor at the Manchester Law School, England, and adviser to the British Medical Association, and Simona Giordano, a bio-ethicist at Manchester University, both of whom sit on the commission.

The proposal states: ``We affirm that humans are born equal, that they are entitled to equality of opportunity, and that neither genetic constitution nor genetic knowledge should be used to limit that equality ... this principle should be incorporated into U.K. legislation and practice.''

A moratorium is already in place to prevent insurance companies from using all genetic tests to influence who they insure and what premiums they set. —

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