After they die, people are happy to donate their hearts, their eyes, even whole skeletons, without knowing anything at all about what will happen to them.
What about genetic information?
Under current law, your genetic information is not inherited by default, so a child with a heritable form of cancer can't access their parent's genetic information after death if no consent was ever established. Clearly there needs to be a policy in the post-Human Genome Project age.
A number of arguments exist both for and against postmortem disclosure. Disclosure could promote a relative's health or well-being and could help them take more control over their lives or it could cause psychological, financial, or other harm. Disclosure efforts might also face logistical challenges as health care professionals work to contact, inform, and counsel at-risk relatives.
"The first question that comes to mind is whether a clinician should communicate findings at all," says lead author Sarah Boers, MD, a PhD candidate at the University Medical Center Utrecht in The Netherlands. "This could mean a breach of confidentiality; however, we conclude that sometimes findings are so important that this overrides confidentiality."
Second, should the clinician only communicate findings if family members ask for it, or should they actively approach family members to inform them? "For now, it is too far-reaching to actively approach family members, for example because of confidentiality and a family member's interest in not knowing," Boers says. "In addition, more public awareness about new sequencing techniques should be raised first, and proper guidelines should be developed."
Boers and her colleagues argue for passive postmortem disclosure policies, meaning that under certain circumstances access to genetic information should be provided to a deceased patient's family members at their request. They recommend that policies be crafted by clinicians and clinical institutions, as well as by professional, national, and ethics committees. The investigators also propose some urgent topics for further research, including patients' and family members' attitudes towards communication of genetic findings after death. Cultural differences across countries may make it inappropriate to adopt a single international policy.
Citation: Trends in Molecular Medicine, Boers et al.: "Postmortem disclosure of genetic information to family members: active or passive?"
