The myth of non-directive genetic counseling

An article and its accompanying editorial in this month’s American Journal of Obstetrics & Gynecology report on a study comparing the practices and attitudes of two types of specialists regarding prenatally diagnosed fetal abnormalities: maternal-fetal medicine (MFM) specialists, who are obstetricians; and fetal care pediatric (FCP) specialists, who are (as the name suggests) pediatricians. The article is titled, “Prenatally diagnosed fetal conditions in the age of fetal care: does who counsels matter?”

The answer to the question posed in the title is decidedly yes. For instance, compared to the pediatricians, the MFM obstetricians reported  more than twice the pregnancy termination rate among patients carrying a fetus with Downs Syndrome. They were more likely than the pediatricians to “somewhat or strongly support” a decision to abort a fetus with Downs Syndrome. The discussion section of the article notes that pediatric and obstetrician specialists may “hold contrasting perceptions of life with disabilities . . . We cannot explain why, after multivariate analysis, our reported termination rates differed between specialties for Downs Syndrome.”

Two observations: First, those who deny that prenatal genetic testing is eugenic claim that the counseling given around such testing is non-directive, that is, that it does not influence a woman whose fetus tests positive for some condition to have an abortion. They say that the counseling gives just the facts: “Your fetus has Downs Syndrome,” not,”You should abort this fetus because it has Downs Syndrome.” If the results of this study are true, it exposes that claim for the wishful thinking — or insidious deception —  that it is. As the study authors write, ” …our study supports concerns that prenatal decisions and outcomes may sometimes reflect provider attitudes.”

Second, isn’t it interesting that between obstetricians (who typically do not care for Downs Syndrome patients) and pediatricians, it is the specialists who actually care for patients who have Downs Syndrome, who actually know something about how the syndrome affects people and families, and who are far more familiar with the details of living with the syndrome, who are the ones less likely to recommend that a woman abort a fetus who is suspected of having it?

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GeGe
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GeGe

I find it interesting that the title of this article used the words “genetic counseling,” but gave no definition to this term as a verb, or as the profession of genetic counseling itself. Genetic counselors are trained specifically in non-directive counseling, and are optimally involved in the situation described above. It is the hope of genetic counselors that their profession be federally licensed so that only a trained counselor who is knowledgeable about the risks and benefits of genetic testing, and sensitive to the family’s wishes, be allowed to provide genetic counseling.

Stephanie, RN BSN
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Stephanie, RN BSN

Interesting observation. I have had several NICU parents describe to me their experiences of being encouraged to abort by their OB/GYN. Most of these parents report feeling “trapped” and “forced to make a tough decision too quickly”. Also, I have had some patients who’s initial prenatal screening indicated a diagnosis much worse than what the child actually had (trisomy 13 or 18, as opposed to trisomy 21 [Down Syndrome]), or no genetic abnormalities at all – showing that “false positives” occur quite regularly in prenatal screenings.

I feel that this is an area that could use much more research.

Jon Holmlund, M.D.
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Jon Holmlund, M.D.

George Will, the Washington Post columnist, has a son, Jon, with Down syndrome. Jon turned 40 last week. Here is a link to Will’s column about it: http://www.washingtonpost.com/opinions/jon-will-40-years-and-going-with-down-syndrome/2012/05/02/gIQAdGiNxT_story.html If the link doesn’t work well, it’s easy to find with a Google search. It seems like the authors of the paper in question are faced with a stunning inability to see the obvious. Also, I would love for Joe, Stephanie, GeGe, and others to go back to my post, last December, on the current use of PGD, and reflect further here, on this blog, on the setting and observing of limits,… Read more »