RH Reality Check: How Virginia’s ‘Conscience Clause’ for Genetic Counselors Could Set a National Precedent

RH Reality Check: How Virginia’s ‘Conscience Clause’ for Genetic Counselors Could Set a National Precedent

By Erin Matson

In August 2011, Liz Read-Katz was living in Texas, nearly 20 weeks pregnant, and was, in the words of the testimony she supplied to Planned Parenthood Advocates in Missouri, “ecstatic but scared as most soon-to-be parents are.” Then her doctor told her that her blood work revealed she had a one-in-ten chance of having a child with trisomy 18. Also known as Edwards syndrome, trisomy 18 is a chromosomal condition that, according to the National Institutes of Health, causes “many individuals … [to] die before birth or within the first month.” This began the cascade of events that led Read-Katz to consult with a genetic counselor for additional information to support her during her very much wanted pregnancy.

After receiving information from a perinatologist, a specialist in high-risk pregnancies, who suggested the chance of trisomy 18 was greater than one in ten, Read-Katz conferred with a genetic counselor while considering whether to have an amniocentesis. “[The genetic counselor] said several times that it wasn’t her position to tell me whether to have an amniocentesis or not,” Read-Katz told RH Reality Check. The counselor provided her with knowledge of not just what the tests would entail and reveal, but also that her perinatologist had a rate of complications from amniocentesis that is lower than the national average. She explained that this information provided some measure of comfort. “It was very reassuring [to know that] no matter what choice we made, we wouldn’t be doing any additional harm.”

In the context of prenatal care, a genetic counselor moves genetic tests between doctors, labs, and sometimes more labs, eventually receiving results, interpreting them, and discussing them with patients. More than 2,000 individuals work as genetic counselors in the United States, according to the National Society of Genetic Counselors.

A conscience clause for genetic counseling also undermines the status of the medical profession as a whole, argues Susan Berke Fogel, director of reproductive health with the National Health Law Program. Conscience clauses are “not only bad for health-care delivery generally but really disrupt health care,” she said. “Obviously, the health quality implications are devastating. … Most health-care providers are very committed to providing quality care.” Read the full article here. »

 

 

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