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This is where things get really complicated. Ethically speaking, we should consider the wishes of the deceased. Would that person have wanted to share this information with relatives?
It’s also worth bearing in mind that a genetic risk factor is often just that; there’s often no way to know whether a person will develop a disease, or how severe the symptoms would be. And if the genetic risk is for a disease that has no treatment or cure, will telling the person’s relatives just cause them a lot of stress?
One 27-year-old experienced this when a 23&Me genetic test told her she had “a 28% chance of developing late-onset Alzheimer’s disease by age 75 and a 60% chance by age 85.”
“I’m suddenly overwhelmed by this information,” she posted on a dementia forum. “I can’t help feeling this overwhelming sense of dread and sadness that I’ll never be able to un-know this information.”
In their research, Solberg and Ortiz came across cases in which individuals who had died in motor vehicle accidents underwent autopsies that revealed other, asymptomatic conditions. One man in his 40s who died in such an accident was found to have a genetic kidney disease. A 23-year-old was found to have had kidney cancer.
Ideally, both medical teams and family members should know ahead of time what a person would have wanted—whether that’s an autopsy, genetic testing, or health privacy. Advance directives allow people to clarify their wishes for end-of-life care. But only around a third of people in the US have completed one. And they tend to focus on care before death, not after.
Solberg and Ortiz think they should be expanded. An advance directive could specify how people want to share their health information after they’ve died. “Talking about death is difficult,” says Solberg. “For physicians, for patients, for families—it can be uncomfortable.” But it is important.
On March 17, a New Mexico judge granted a request from a representative of Hackman’s estate to seal police photos and bodycam footage as well as the medical records of Hackman and Arakawa. The medical investigator is “temporarily restrained from disclosing … the Autopsy Reports and/or Death Investigation Reports for Mr. and Mrs. Hackman,” according to Deadline.
This article first appeared in The Checkup, MIT Technology Review’s weekly biotech newsletter. To receive it in your inbox every Thursday, and read articles like this first, sign up here.
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