The National Society of Genetic Counselors issued a statement affirming its ethics code, after a New England Center for Investigative Reporting story featured parents angered at counselors paid by genetic-testing companies.
The statement, which the society called a response to the NECIR story, noted that the ethics code says counselors’ “primary concern” is “the interests of their clients.” It did not directly address the parents’ concern that counselors’ interpretation of genetic test results may have been influenced by their links to the test makers.
One expectant mother quoted in the story was upset at the advice she received from a counselor, who allegedly did not disclose that she had received money from a test maker. The counselor backed the accuracy of a prenatal screening test indicating Down syndrome for a baby even after the child was born with no evidence of the disorder, according to the mother.
The society’s conflict of interest policies recommends that counselors “acknowledge and disclose circumstances that may result in a real or perceived conflict of interest.”
The society reiterated its support for state licensure for genetic counselors. That would “ensure that an oversight body exists for the profession and as a point of recourse for any public concerns,” according to the statement. There are 18 states that now have licensure.
The Society did not immediately respond to questions about their statement.
Genetic counselors advise patients on prenatal screening tests for conditions like Down syndrome and a growing list of far rarer genetic conditions. As the tests multiply, demand for counselors is growing and many are moving away from hospitals to work for commercial labs where pay is often better.