Genetic testing of the dead for inherited heart rhythm disorders could resolve about one third of sudden death cases that would otherwise remain unexplained – and potentially save lives of surviving family members – if only the tests were used more often. Hearts rhythm disorders kill without leaving a mark, and leave behind a family facing two tragedies, an unresolved death, and perhaps a high risk that that they, too, could succumb to the same fate. Adding to the heartache, the sudden death of a young person with no apparent cause often comes to the attention of law enforcement, and the family comes under suspicion.
This issue is fraught with challenges. Blood samples at autopsy that could provide such information are rarely saved. Autopsy thoroughness varies widely across the U.S., from an exam by a county coroner, which likely ends with toxicology, to a full-on workup by a cardiac pathologist that includes the latest genetic analyses. Perhaps the largest hurdle in this complicated issue is finding a way to pay for the genetic testing. As I say in the story, insurance coverage ends when the heart stops beating. The most significant finding that came from this story is bringing to light the lack of payer reimbursement for postmortem genetic testing. Many insurance companies still won’t cover genetic testing in the living, much less the dead.
In New Zealand, for example, the Ministry of Justice pays for the test. In the U.S. families have to either pay for postmortem genetic testing out of their own pockets, each test costs in the $5000 range, or seek out one of the handful of large university medical schools conducting such tests on a research protocol. That’s a shame because these tests do save lives. This is a complicated issue, and I don’t think any other reporter has ever covered this story.