A Delicate Question
(April 21st, 2015) If you’re ever faced with the possibility of finding out about the genetic information of a close relative, who passed away, would you want to know? Biomedical ethicists discuss the pros and cons of disclosing genetic information of deceased patients.
Recent advances in next-generation sequencing (NGS) mean that it is now possible to sequence the entire genome of an individual. And it is highly likely that this will soon become a routine clinical operation. However, despite the benefits that this may bring to the patient, it also uncovers new ethical and legal challenges as physicians start to ask whether and how this information should be disclosed to relatives. This aspect becomes particularly poignant when patients pass away and don’t leave specific instructions about how to handle such information.
Close relatives share a significant proportion of their genetic information, and may have a legitimate interest in receiving these results, especially if they could have an impact on their own health. It is generally accepted that this genetic information – or part of it at least – should be made available to patients and their families while patients are still alive, but there is less consensus about how to deal with it after the death of the patient. “Currently, there is no common procedure for the disclosure of genetic information to family members of deceased patients. Therefore, it is an urgent topic to address,” explains Sarah Boers, lead author of a recent paper on the topic, who's based at the University Medical Centre Utrecht in The Netherlands.
There are several arguments both for and against post-mortem disclosure of genetic information. On the one hand, it can improve the health and well-being of family members by helping them adjust certain decisions. ”It may enable relatives to take control of their life and adjust future plans, for instance in terms of reproductive planning,” says Boers. However, on the other hand, it can have a negative impact on the whole family. “Communication of genetic information could disregard the deceased’s wishes, have harmful consequences for relatives (e.g. psychological or financial harm) or violate a relative’s interest in not knowing.” From a practical point of view, this disclosure also faces numerous logistical difficulties if healthcare workers have to contact and inform all at-risk relatives.
Then it comes to the question as to whether clinicians should communicate only if family members ask for this information or if they should actively approach relatives. Boers and her colleagues defend a passive disclosure, which means access to genetic information will only be granted after a specific request from family members. The team believes this system not only respects the privacy of the deceased patient, but is also currently the best practical solution. “Passive disclosure is the best option for now, because it does provide family members with the chance to receive information that may be important for their health, while at the same time the interest of not knowing genetic information of family members is respected,” says Boers.
It’s also essential to develop a gentle and compassionate way to disclose information after death. For most people, understanding the sheer quantity of genetic data – not to mention its ambiguity – will be virtually impossible without any help. To make sense of all this information, Boers suggests a qualified disclosure policy, containing a standard default package for all patients, supplemented by additional information relevant to late onset disorders or reproductive issues, if necessary. “Our qualified disclosure policy balances the difficulties people may have with unrestricted result selection on the one hand with autonomy on the other hand. We are currently testing this policy in patients with cancer.”
For now passive disclosure may be the best option, but the team recognises that active disclosure is an alternative that needs to be considered in the future. However, before this method can even be examined, it’s imperative to explore the patients’ and family members’ views on post-mortem disclosure, as well as develop appropriate guidelines for dealing with this issue and research the consequences of sharing potentially delicate facts.
When asked about how most physicians feel about the subject, Boers believes most have not formed an opinion yet, as the issue is quite new and has received very little attention. “This is also the case for the public and the patients,” Boers adds. “One of our aims is to create more awareness about the issue of post-mortem disclosure among these different stakeholders, and to inform them about the pros and cons.”
Photo: Fotolia/ Michaela Müller