Study shows couples choose to abort after prenatal genetic testing with no counseling

The study found that some couples choose abortion after receiving information that their fetus has a genetic disorder, even though that genetic disorder does not cause serious health problems. From The Houston Chronicle:

Illustrating the complications of prenatal genetic testing, researchers reported Tuesday that some couples chose to terminate pregnancies even though the mutation carried by their fetus probably would not have resulted in serious health problems.

The researchers, from several medical centers in Israel, analyzed information about Gaucher disease, a genetic condition whose symptoms range from severe to nonexistent. It occurs mainly in Ashkenazi Jews, or those of Eastern or Central European descent.

Experts say the new findings, published in this week's Journal of the American Medical Association, raise questions about the appropriateness of screening for treatable or nonlife-threatening diseases — a practice that is likely to increase as scientists continue to discover the function of individual genes.

So the question is: is it appropriate to prenatally screen for nonlife-threatening diseases?

Initially, it would seem that the answer would be "NO" if couples are running out to abort children that are even the slightest bit defective. But I think that "NO" is a knee-jerk reaction. Let us consider more facts from the study:

Three-quarters of the couples had prenatal diagnosis performed when they got pregnant, and 16 affected fetuses were identified. Four of the16 were aborted.

The researchers found that carrier couples were less likely to terminate their pregnancies if they were counseled by a specialist in Gaucher disease in addition to a genetic counselor.

Only one of 13 couples who met with a Gaucher expert chose to abort,
compared with three out of three couples with no medical counseling. [my emphasis]

So, those couples who were more informed and had counseling from professionals were MUCH less likely to abort. Those couples who were given the test results and left to fend for themselves, got scared and aborted. Genetics can be scary and professional counseling is critical for proper interpretation of genetic test results:

Dr. Joel Charrow of Children's Memorial Hospital in Chicago, who treats patients with Gaucher disease and counsels carrier couples, said he doesn't know of any terminations among parents he spoke with about the condition.

The Catholic Church is very clear on prenatal testing. It is a good thing, unless it is procured with the specific intention of aborting upon an undesired result.

This study shows that we need more information and more qualified genetic counselors to help couples deal with an unexpected and possibly scary prenatal test result. If you, or someone you know, has had such a prenatal genetic test result, point them to the nearest genetic counselor pronto. In the interim, Be Not Afraid is an excellent online resource.

Finally, this study makes me give kudos to Senators Brownback and Kennedy for pushing their legislation the Prenatally and Postnatally Diagnosed Conditions Awareness Act which:

...would provide for the expansion and further development of a national clearinghouse on information for parents of children with disabilities, so that the clearinghouse would be better equipped to assist parents whose children have recently been pre- or post-natally diagnosed. The bill also provides for the expansion and further development of national and local peer-support programs. The bill also calls for the creation of a national registry of families willing to adopt children with pre- or post-natally diagnosed conditions.