July 7, 2022

DEBATE: WHO OWNS GENETIC INFO?

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.”