WITH DNA sequencing becoming faster, more accurate and cheaper, medicine is in the midst of a genomic revolution. Many more people are likely to have their genome mapped in coming years.
While alive, some individuals will choose not to share genetic information with their family. This could be for reasons of privacy, or perhaps because of a rift or doubts about their parentage. That means details of serious heritable diseases won鈥檛 always be passed on.
But when the person dies, a new dilemma arises. Is confidentiality still sacrosanct, or should close relatives be told about or given access to the deceased鈥檚 genomic data? This question has no clear answer yet. It鈥檚 high time it did.
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There are many arguments for opening up the data to relatives. Doctors arguably have a duty to warn of any hereditary disease risk, especially if it poses an imminent risk of harm.
Then there鈥檚 the idea that genomic data can help relatives plan their lives 鈥� for example, in making choices about having children. Finally, some would argue that a genome is, by its very nature, family property.
There are also many arguments against. Relatives may not want to know about their risk of inherited disease. Access to the data could lead to psychological, social or financial harm. Some say a patient鈥檚 desire for confidentiality should extend beyond death. Finally, to inform and counsel all relatives may be unfeasible.
鈥淎ccess to a close relative鈥檚 genome once they die could lead to psychological, social or financial harm鈥�
My colleagues and I think the default should be passive disclosure: allowing clinicians to pass on data after a death, if relatives ask for it. In the event of a health risk that is imminent and serious but also treatable, active disclosure should be considered, with clinicians taking the initiative to reveal the data.
Anyone having genomic sequencing now should be counselled on family impact, and, if need be, an agreement should be drawn up about passing data on after death.
The rise of genomics requires that professional and regulatory bodies get to grips with these matters now.
This article appeared in print under the headline 鈥淪ecrets, lies and DNA鈥�
