Should families own genetic information? Should patients pass on potentially important information to relatives? Should doctors withhold genetic information which could be useful in giving advice to relatives? A recent issue of the BMJ features a debate on this sensitive topic and sketches some of the conundrums posed by better knowledge of genetics.
Taking the negative is , of the University Hospital of Wales. He contends that genetic information should be regarded as private and personal. Although doctors have a duty to report infectious diseases, genetic defects do not pose “an immediate and grave form of damage”. The preventable harm will often be the birth of a handicapped child — and he refuses to condone the notion of a “wrongful birth”.
Taking the affirmative is , of Princess Anne Hospital, Southampton. She feels that the notion of “ownership” of genetic information places concedes too much to individual autonomy. She supports what she calls a “joint account” model for genetic information, since genetic information is, by definition, common to all members of a family. “If anyone is to own genetic information, it has to be all those who have inherited it. More importantly, it must be available to all those who might be at risk.”
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