Maybe it’s OK that DNA comes with strings attached

Recently, members of the National Association of Medical Examiners were asked to cooperate with a Mayo Clinic research project that would analyze the DNA of victims of unexpected infant death and that of their parents. Researchers hope to identify genetic mutations that might be relevant to these deaths.

Cooperating medical examiners would obtain DNA samples from infants meeting the Mayo criteria and refer the babies’ parents for “formal consenting to receive and analyze the extracted DNA as well as to be themselves enrolled for genetic testing ...”

This seems a very worthwhile project, but some of my colleagues were hesitant. Mayo would get formal consent to “receive and analyze” the DNA, but what about consent to obtain and save samples in the first place? Would it be legal for a medical examiner to procure tissue for research if the proposed testing wasn’t needed to determine cause and manner of death?

A medical examiner from North Carolina said his state’s attorney general believed research testing would be permissible if “the result of the examination/testing would aid in the resolution of the individual case or in the class of cases that it was drawn from.”

Still, some of my colleagues feared research participation could have unanticipated legal consequences. One recommended that medical examiners speak with their legislators before cooperating with any research protocol.

My, how things have changed in my career lifetime.

When I began working, doctors practiced surgical or invasive or resuscitative procedures on bodies at the medical examiner’s office. We allowed it because we thought it was in everybody’s best interest for doctors to have as much experience as possible before performing a procedure on a living person.

It wasn’t unusual for medical examiners to procure and supply tissues for research. Medical research was valuable to all of society. We typically didn’t ask permission from the next-of-kin. We’d retain a diseased heart or lung to use as props when speaking to students or citizen groups on the dangers of poor diet or smoking. It never occurred to us that we were violating anybody’s rights.

Now, nobody would do any of these things without consent.

In recent years, several medical examiners have been sued for preserving a brain, heart or other organ or body part for specialized post-autopsy testing without notification or consent. An October 2012 article in the New York Post about such lawsuits said the medical examiner’s office in New York City kept the brains of more than 9,200 people in the last eight years and referred to the practice as “the great brain robbery.”

On the one hand, I’m aggravated by these lawsuits. Why ask permission to do unusual, but valuable tests? Why should medical examiners worry about lawsuits when they consider participating in research?

On the other hand, medical examiners in the past – myself included – took too many liberties with the bodies of the dead. It’s easy to blame lawyers and lawsuit-happy families, but maybe our own doctors-know-best arrogance is mostly to blame. Dr. Carol J. Huser, a forensic pathologist, served as La Plata County coroner from 2003-12. She now lives in Florida and Maryland.

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