Letter: Safeguards on the use of genetics

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The Independent Online
Sir: Steve Connor's questions in his article 'Who you are - the perilous knowledge' (6 January) are well posed: 'Who has the right to know what is written in someone's genes? Who has the right to own genetic information? Who has the right to act on genetic information?'

The debate has already been begun. This council's new report, Genetic Screening: Ethical Implications, was noticed by the Independent on 8 December. Our report is not the first. Our annex listing reports since 1989, both here and abroad, runs to three pages.

Since the council's report went to press, the American Institute of Medicine has released the pre-print of Assessing Genetic Risks. The conclusions of both reports are strikingly similar.

We hope in 1994 to promote wide public discussion of our recommendations. They are designed to guard against scientists 'trampling on the very stuff of humanity'; at the same time, we should be exploring the possibilities of preventative medicine yearned for by the parents of children who are born with genetic disorders.

Yours faithfully,

DAVID SHAPIRO

Executive Secretary

Nuffield Council

on Bioethics

London, WC1

6 January

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