Understanding Posthumous Wishes

When addressing the complexities surrounding genetic testing and the dissemination of medical information following an individual’s death, it is essential to consider the deceased’s preferences. The wishes of the departed can often influence decisions about whether or not to disclose potentially troubling genetic information to their relatives.

The Nature of Genetic Risk

Genetic predispositions can provide insights into potential health risks, yet they do not guarantee the development of diseases nor predict the severity of symptoms. This uncertainty becomes particularly crucial when the genetic risks involve conditions that lack effective treatment or remedy. The concern arises: could informing family members lead to unnecessary distress?

Personal Test Cases

A notable case involves a 27-year-old woman who received alarming results from a 23andMe genetic test. The test indicated a 28% likelihood of developing late-onset Alzheimer’s disease by age 75 and a 60% probability by age 85. She expressed on a dementia support forum, “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.”

Findings from Research

In a study conducted by researchers Solberg and Ortiz, illuminating instances were revealed where individuals, post-mortem, were found to have asymptomatic health conditions through autopsies following fatal accidents. For example, one man in his 40s was identified to have a genetic kidney disease, and a 23-year-old was discovered to have had kidney cancer.

The Importance of Advance Directives

Advance directives are vital in clarifying the wishes of individuals concerning their end-of-life care and can also cover the sharing of health information after death. However, a mere third of adults in the United States have completed such directives, which typically do not address the posthumous sharing of health information.

Solberg and Ortiz advocate for an expansion of these directives to include guidelines about health information disclosure once an individual has passed away. “Talking about death is difficult,” Solberg states, underscoring its importance for medical professionals, patients, and families alike.

Legal Considerations

On a legal front, matters surrounding health information privacy are also at stake. Recently, a New Mexico judge granted a motion to seal the medical records and other related documentation for individuals implicated in a high-profile case. This highlights the delicate balance between respecting privacy and the pursuit of posthumous health knowledge.