Senate bill would require genetic testing for some deaths of young people

Family's story of lost 19-year-old daughter inspired bill

FRANKFORT, Ky. (WTVQ) – Legislation that would require genetic testing when a young person dies inexplicably received approval Thursday from the Senate Judiciary Committee.

“Senate Bill 80 is essentially an attempt not only to bring closure to families who have suffered the death of a young loved one, but as well as an effort to give them certain information that might in fact save lives,” said the bill’s sponsor, Sen. Phillip Wheeler, R-Pikeville.

The legislation calls for the state medical examiner’s office to conduct a genetic test when a postmortem examination of someone under 40 does not determine the cause of death. If the genetic test reveals a cause, coroners must note that information on the death certificate.

Wheeler introduced committee members to Tracy Fletcher, whose daughter passed away in 2018 from a cause that remained unknown until two years later.

“Shantell was a 19-year-old, full of life, young lady, very athletic all through school,” Fletcher said. “Loved her car. She was a car enthusiast. She worked on that car many hours to get it where she had it. Loved to be beautiful, but yet she was a tomboy.”

Fletcher recalled the terrible time when her daughter was found unresponsive.

“There was no one there that night to help her…No one can find anything that night. There was no evidence. They just said she looked like she laid down to sleep. She was a beautiful little girl,” she said.

Losing a child at a young age and not understanding why can be exacerbate the grief, Fletcher said. The autopsy results came back as undetermined, and Fletcher, a nurse, said she tried to understand what happened by searching online.

“As a parent, to not know what happened to your child at the age of 19, it’s not just devastating you lost them, but it’s the what-ifs that can drive you insane. And we went through a lot of the what-ifs,” Fletcher said.

Not only could the legislation help families find answers to heart-wrenching questions about their loved ones, but also it could inform surviving family members of possible health problems they might encounter themselves.

Once it was determined her daughter passed away from a genetic disorder, Fletcher consulted a cardiologist and he referred her to the University of Virginia. That’s where the family ended up getting cardiac workups.

At the university, they met Matthew Thomas, a pediatric genetic counselor. Thomas testified to the committee virtually and answered a question from Sen. John Schickel, R-Union, about the possibility of opting out of the genetic testing.

“In my experience, medical examiners generally have the responsibility of investigating what the cause of death is, and there’s not a regular communication with families about what they want to opt in and out of,” he said. “That certainly can be something that’s considered, but in this situation, the purpose of the testing is to find out why somebody died and protect the family from that ever happening again.”

Wheeler said there is no opt-out option in the bill, but he would not mind adding one.

The bill is also known as the Micah Shantell Fletcher Law.

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