Ethical Considerations in Sharing Genetic Information After Death
The complexities surrounding the dissemination of genetic information following a person’s death raise significant ethical questions. Primarily, these concerns focus on the deceased individual’s wishes regarding how their health information is shared with family members.
The Impact of Genetic Risk Factors
Genetic testing can provide insight into potential health risks, such as the likelihood of developing certain diseases. However, these insights often reflect risk rather than certainties. For instance, even with genetic predispositions, there exists considerable uncertainty about whether an individual will actually develop a disease or the severity of any symptoms if they do.
A poignant example is illustrated by a 27-year-old woman whose genetic results indicated a 28% chance of developing late-onset Alzheimer’s disease by age 75 and a 60% chance by age 85. She expressed her distress in a dementia forum, stating, “I’m suddenly overwhelmed by this information. I can’t help feeling this overwhelming sense of dread and sadness that I’ll never be able to un-know this information.” This emphasizes the emotional burden that such knowledge can impose, particularly when no treatment or cure exists.
Case Studies: Unforeseen Health Issues
Research conducted by experts Solberg and Ortiz has revealed instances where individuals who died unexpectedly had undiagnosed health conditions. Cases included a man in his 40s who passed away from a motor vehicle accident and was later discovered to have a genetic kidney disease, as well as a 23-year-old who was found to have kidney cancer posthumously. These findings underscore the importance of understanding a person’s health history, which can have implications for surviving relatives.
The Need for Clear Communication on End-of-Life Wishes
To navigate these complex issues, it is essential for individuals to communicate their preferences regarding medical procedures, including autopsies and genetic testing, before death. Advance directives are legal documents that can articulate these wishes; however, surveys indicate that only about one-third of Americans have completed such documents. Furthermore, these directives typically address pre-death care rather than post-mortem information sharing.
Solberg and Ortiz advocate for a broader scope of advance directives, suggesting that they should encompass how health information may be shared after a person’s death. “Talking about death is difficult,” Solberg notes, highlighting the discomfort that physicians, patients, and families often experience surrounding these discussions. Nevertheless, addressing these topics is vital to ensuring that individuals’ wishes are respected and understood.
Conclusion
The ethical considerations of sharing genetic information and health records after death highlight the necessity of clear communication between individuals and their families. By promoting discussions about end-of-life wishes and expanding the definitions of advance directives, families can better navigate the complexities of grief while being mindful of potential health concerns that may affect them.
