Fetal Genetic Testing: the Dystopian Future?

Adding to the plethora of ethical issues produced by developments in biotechnology, a new genetic screening test may make other such issues pale in comparison. Non-Invasive Prenatal (genetic) Diagnosis (NIPD) tests could be involved in 3 million out of 5 million pregnancies in the U.S. in the near future, according to Henry Greely, Professor of Genetics at Stanford School of Medicine.

An NIPD test consists of taking a small blood sample from a pregnant woman early in pregnancy (during the first trimester) and analyzing it for thousands of genetic traits possessed by the fetus. This non-invasive procedure is possible because DNA from the fetus flows through the mother’s blood. A 10-milliliter blood sample can reveal the fetal genotype for thousands of sites. These include not only genetic diseases such as Down syndrome and cystic fibrosis, but also variations for a range of traits and characteristics. NIPD tests can also detect missing or extra chromosomes.

Why does the development of this test present an array of serious ethical issues? To begin with, the number of abortions in the U.S. could soar as expectant parents learn that their fetus carries the genes for disabling diseases or even physical traits considered undesirable. When testing for 100 traits or diseases, minor disorders could result in abortions, further trivializing the practice. The fact that NIPD tests are conducted so early in pregnancy may well lead people to opt for abortion for any number of reasons. If an NIPD test indicates any “undesirable” traits, women may decide to have an abortion based on their idea of a “perfect” child. Gender-selective abortions will also mount as is already occurring in staggering numbers in China and India even without these tests. NIPDs could also be used to prevent the birth of people with disabilities, which would in turn affect research, treatment, and support for people already living with disabilities. Parental choices may be dictated by insurers, governments, and health care systems. Informed consent for NIPDs is not truly possible since it cannot be known with certainty whether a child would ultimately develop conditions predicted by the test. Finally, the specter of eugenics looms over the widespread use of NIPDs like an ominous cloud. In addition to medical characteristics, NIPDs can detect traits such as skin, hair, and eye color. As Nancy Fliesler observes in Children’s Hospital Boston’s vector blog, it would pay to take a serious second look at the 20th century’s history of eugenics before putting 21st century technology into practice.

NIPDs are projected to cost as little as $1,000 within a few years, and therefore likely to be widely accessible. Few Americans know that Medicaid pays for 40% of all births in the U.S. and covers a genetic prenatal test for Down syndrome. It is logical to assume that taxpayer-financed NIPDs will soon become the norm for pregnancies in the U.S., particularly since the profits for biotechnology companies that produce them and clinical laboratories that analyze them will soar.

The Center for Bioethics and Culture (CBC) opposes a thoughtless rush to embrace this nascent technology given the many serious ethical and moral issues it represents. The CBC calls for critical discussion and analysis of fetal genetic testing among the numerous stakeholders involved, ranging from religious constituencies, the disability community, ethicists, medical schools, obstetricians and gynecologists, neo-natalogists, policy-makers, and the media. The inherent value and dignity of all human life and respect for its preciousness are CBC’s foundational principles which cannot be compromised for selfishness, greed or a blind obsession with technological development.