Who should ‘own’ genetic information?

Who should ‘own’ genetic information? July 8, 2007 We all share our genetic make up with relatives, but should we also share ownership of the results of DNA analysis or should this knowledge be considered private? Two experts give their views in this week’s BMJ. Dr Anneke Lucassen, a clinical geneticist at the University of Southampton, believes that if anyone is to own genetic information, it has to be all those who have inherited it and, more importantly, it must be available to all those who might be at risk. The question, she says, is how to balance a right to privacy with disclosing risks to others. Patient confidentiality is of course one of the most important cornerstones of medical practice, she writes. Nevertheless, confidentiality is rarely seen as absolute, and there are both statutory and professional guidelines on exceptions to the duty of confidentiality. The Human Genetics Commission’s 2002 report suggested that ‘genetic solidarity’ and altruism should be promoted, while UK guidelines state that where there is a serious preventable harm, confidentiality may be breached. Methods for sharing information need to be sensitive and relevant, she says, but today’s increasingly individualistic modern medicine must find ways of facilitating this. It should not be denied because of a narrow view of information ownership, she concludes. But Professor Angus Clarke at the Institute of Medical Genetics in Cardiff argues that genetic information should be regarded as private and personal. To treat it as if it were owned in common by a body as vague and ill defined as ‘the family’ is flawed, he says. He concedes that there are occasions when genetic information does belong intrinsically to the family. For example, in a genetic linkage study looking at the pattern of sharing of DNA sequences. While he does not deny that family members should be prepared to share important medical information with their relatives, two particular problems arise, he says. The first occurs when an individual fails to pass potentially important information to their relatives. He argues that genetic disorders are not sufficiently similar to infectious diseases such as gonorrhoea, syphilis and HIV, that doctors have a duty to enforce disclosure by patients or clients to other members of their family. The harm done by a failure to disclose will usually not entail an immediate and grave form of damage, he writes. The second problem is when an individual forbids health professionals to release or to use genetic test results to provide more accurate or relevant medical advice to their relatives. Once family members know that a relative has been diagnosed with a particular genetic condition, Professor Clarke argues that the more detailed, technical information (such as the precise mutation causing the disease in the family) belongs to the laboratory or the health service that generated it and not to either the individual or the family. ......... ZenMaster

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