A child, perfectly healthy, suddenly dies. It’s a heart condition, the doctor says, possibly genetic. The autopsy was inconclusive. It’s hard to know for sure. It just happens sometimes. It happens 11,000 times a year in the U.S. to people under the age of 45. Doctors call it “sudden unexpected death,” but that doesn’t give a grieving family any answers.
But that might be changing, thanks to the power of genetic tests. Mayo Clinic doctor Michael Ackerman pioneered the so-called molecular autopsy in 1999, using a DNA test to explain the sudden death of a 19-year-old woman with a previously-undiagnosed inherited heart condition. Since then, sequencing DNA has become orders of magnitude cheaper and more sophisticated. With medical examiners considering DNA tests as part of autopsy reports, the molecular autopsy has raised new ethical concerns.
Family members, in looking for an explanation for their grief, might end up finding unsettling things about themselves. What medical advice do you give someone carrying the same ticking genetic time bomb that killed their loved one? And who is responsible for telling the family?
“Traditionally with medical examiners, there is no patient-physician relationship. They have very little interaction with the family” says Quianta Moore, a health-policy scholar at Rice University. Molecular autopsies completely flip that paradigm. Moore studied ethical issues around molecular autopsies at the behest of Harris County’s medical examiners, who wanted to DNA test dozens of old cases where the case of death was unknown.