Should doctors share gene tests after a death in the family?

Families share genes but that doesn’t mean no individual in a family should be accorded privacy about their genetic tests. magw21/Flickr, CC BY-NC-SA

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 views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.