Would you want your family members to be told about your genetic tests after your death if it meant saving their lives through early medical intervention? The authors of a paper just published in Trends in Molecular Medicine argue doctors may only have a duty to disclose such information if asked by a living relative.
Consider the following case. Mary recently died from thyroid cancer, but some of her tissue is stored in the pathology laboratory where it was tested. For her particular cancer, early detection can mean the difference between life and death.
Mary’s sister Sally may want to know her own risk of developing the cancer, so she can take precautions if she has a genetic mutation. But she may, equally, not want to know, as some people don’t want to be influenced by the results of genetic tests.
An ethical dilemma
Mary’s doctor has two options.
The first is active disclosure, which places a legal or ethical duty on Mary’s doctor to warn her living relatives about their genetic risk. This duty violates Mary’s right to privacy and confidentiality. It also violates her autonomy (if autonomy is thought to continue after death), especially if Mary had stipulated that she didn’t want her relatives to know her medical details.
Being contacted by her late sister’s doctors could distress Sally and breach her right not to know her risk. What’s more, it might not be feasible to find or contact Mary’s relatives.
The second option is passive disclosure, which the authors of the paper prefer. For this option, Mary’s doctor would be justified in telling Sally about Mary’s condition if Sally asks. But the doctor does not have to contact Sally to tell her without prompting.
Concerns about the breach of Mary’s rights of privacy, confidentiality and autonomy could be minimised if there was counselling before all tests about possible postmortem disclosure to close relatives. This would also allay any concerns Mary’s doctor might have about breaching her privacy or autonomy.
The authors of the paper say active disclosure may be morally justified only if the risk of severe disease is very high and clinical action makes it possible to avoid disease.
Australian law supports the authors’ stance, encouraging passive rather than active disclosure. Here, Mary’s doctor wouldn’t have a duty to contact Sally but, if Sally asked about her risk, the doctor could lawfully tell her about the risk revealed by Mary’s test.
The federal Privacy Act 1988 allows personal information about a patient to be disclosed to a genetic relative if the person holding the information:
reasonably believes that the use or disclosure is necessary to lessen or prevent a serious threat to the life, health or safety of another individual who is a genetic relative of the first individual.
Mary’s information can be disclosed to Sally without Mary having been counselled about such a possibility when she was tested. But there’s an important point here that the authors of the Trends in Molecular Medicine paper do not mention.
Genetic information is of two kinds. The first is that a gene mutation exists in the family. The second is the status of particular family members for that mutation – positive or negative.
In Australia, Sally would be entitled to know the familial information – that the mutation exists in the family, but not whether Mary was positive or negative for the mutation. That part of Mary’s medical information remains confidential as Sally doesn’t need to know it for her own health care.
The Australian law makes it clear that doctors can breach confidentiality where it is necessary to protect the health of a close relative. That person’s health is more important than the privacy of the deceased.
The principle also emphasises the familial nature of genetic information, which is vital in the delivery of genetic services in the future.