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The complexities surrounding posthumous health information disclosure raise significant ethical questions. It is essential to think about the desires of those who have passed away. Would they have wanted certain genetic information shared with their family members?
Moreover, it is critical to emphasize that genetic predispositions are not definitive. Many risk factors cannot accurately predict whether an individual will develop a particular illness or the severity of potential symptoms. In cases where the genetic risk pertains to conditions that lack treatment options, alerting a family member may introduce unnecessary anxiety.
One instance illustrates this dilemma: a 27-year-old received unnerving information from a 23andMe test, citing a “28% chance of developing late-onset Alzheimer’s disease by age 75 and a 60% chance by age 85.”
“This information has hit me hard,” she shared on a dementia forum. “I feel an overwhelming dread knowing I can never forget this.”
Research conducted by Solberg and Ortiz highlights instances where individuals involved in fatal vehicle accidents were later found to have undiagnosed conditions during autopsies. For example, one man in his 40s had a genetic kidney disorder, while a 23-year-old was discovered to be suffering from kidney cancer.
To address such situations, it is vital for medical professionals and families to be aware of an individual’s preferences regarding autopsies, genetic testing, and privacy concerning health information. Advance directives can help articulate a person’s wishes regarding medical care as they approach the end of life. However, statistics indicate that only about one-third of people in the United States have established such directives, which typically address pre-death care rather than post-mortem considerations.
Solberg and Ortiz advocate for broadening the scope of advance directives to include stipulations about how health information should be shared after an individual has passed. “Discussing death can be a tough conversation,” Solberg remarked. “It’s challenging for physicians, patients, and families alike, but it is a conversation that needs to be had.”
On March 17, a New Mexico judge approved a request from a representative of Hackman’s estate to restrict access to police photographs, body camera footage, and medical records related to both Hackman and Arakawa. According to the ruling, the medical investigator is “temporarily restrained from disclosing … the Autopsy Reports and/or Death Investigation Reports for Mr. and Mrs. Hackman,” as reported by Deadline.
This article was initially published in The Checkup, the weekly biotech newsletter of MIT Technology Review. For updates and similar articles delivered to your email each Thursday, you can subscribe here.
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