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Aksentije, 14, a Serbian youth with Down Syndrome embracing his best friend Dusica (R); Aksentije plays a leading role in a film highlighting the difficulties of disabled persons being accepted into society.
Right now, many pregnant women opt to have a prenatal screen that gives them the statistical chance that their baby will have Down syndrome. Partially depending on whether the chance is, say, 1 in 35 or 1 in 2000, some women then go on to have an amniocentesis—a procedure that involves inserting a needle into the woman’s belly and extracting amniotic fluid to determine if the baby has Down syndrome and other chromosomal abnormalities; 80 to 90% of the time that Down syndrome is detected, the woman chooses to abort.
There will now be, within a year, a safer (both tests available now come with a small risk of miscarriage), cheaper, and earlier “fetal DNA test” for Down syndrome that gives definite results as to whether or not the baby has Down syndrome. It is a simple blood test of the mother, from which DNA is analyzed, and it can be done as early as seven weeks. Because it is safe, cheap, and definitive, it is expected that many women will take the test.
Because it is earlier, some women may believe the fetus is not a life yet and feel more comfortable aborting; also, it may be easier for a women to abort before she is showing and possibly before she has told many people, including the father. In addition, it is expected that this fetal DNA test will, within 3-5 years, be able to determine the broad spectrum of genetic traits, from sexual orientation, physical and personality characteristics, skill levels, and disease risk—for example, if your baby has the APOE Alzheimer’s gene or a 60% of getting cancer in her 40s.
Currently, there are no state or federal restrictions on permissible reasons to abort. How do we decide as a society where to draw the line regarding what we value in a human being? Or should each individual couple decide for itself? Genetic testing—such as online companies offering a gender test—is already an industry that is largely unregulated by the FDA. Should the government regulate or stay out? Will this test mean that we’re seeing the last generation of individuals with Down syndrome?
David Magnus, Ph.D., director, Stanford Center for Biomedical Ethics; professor of pediatric medicine and biomedical ethics, Stanford Schools of Medicine
Brian Skotko, MD, clinical fellow in genetics, Children’s Hospital Boston; co-authored numerous books and articles on Down syndrome and other intellectual disabilities; serves on the Board of Directors for the National Down Syndrome Society