The term ‘eugenics’ arouses feelings of horror and disgust and memories of the atrocities of the Holocaust and fascist Germany. The practice involved national campaigns of sterilization and marriage restrictions on those deemed genetically less fit. It is less well known, however, that many countries including the United States instituted eugenics policies before Germany did. In the U.S., upwards of 60,000 Americans were sterilized, and thousands more were prevented from legally marrying in the beginning of the twentieth century.1 In Germany, Hitler used this “science” as a justification for killing those who did not fit his warped genetic ideal -- people such as Jews, gypsies, and gays. No decent human being of the twenty-first century with any respect for human rights would defend such a barbaric practice. However, modern practices in genetics are starting to possess a similar sentiment.
Prenatal genetic screening practices such as amniocentesis and non-invasive prenatal testing (NIPT) have become safer, more accessible, and less expensive in recent years.2 There are various methods of NIPT, but all involve drawing blood from the mother and examining free floating fetal DNA which can determine whether or not some aneuploidies are present.3 This process is noninvasive and distinct from amniocentesis in which fetal cells must be taken directly from the amniotic fluid or placenta. These tests allow for screening of disorders such as Down syndrome, sickle cell disease, spina bifida, and anencephaly.4 The results provide parents with either the relief of knowing that their child will be genetically normal, or the difficult decision of whether or not to abort a genetically abnormal fetus. Though amniocentesis has been around for a while and is widely accepted, NIPT is a relatively new procedure and warrants a renewed investigation into the ethics of these tests.
There are certainly distinct differences between this practice and the racially motivated eugenics of the early twentieth century. However, under the Oxford English Dictionary definition of eugenics as “the science of improving a population by controlled breeding to increase the occurrence of desirable heritable characteristics,” this practice is nevertheless a variety of eugenics.5 Does the fact that the subjects are unborn fetuses justify the practice as a more moderate form of eugenics, or could we be perpetuating a morally reprehensible practice in the name of progress just like our predecessors?
The question of abortion aside, there are various ethical concerns for NIPT specifically. The United Nations’ International Bioethics Committee (IBC) wrote a report in 2015 updating its stance on advancements in genetics and their implications in human rights.6 The report discusses several new advances in human genetics and biomedicine including NIPT. According to the IBC report, as NIPT continues to become more available and cheaper, women and couples might be put in extremely difficult situations that they did not anticipate given the routine nature of the procedure. Inevitably in cases of an undesirable test result, the parents must decide whether or not to abort the fetus. Currently around ninety percent of couples choose to abort a baby with Down syndrome.7 The IBC raises the concern that this could lead to a “discriminatory practice” of aborting fetuses with genetic abnormalities or those of an undesired sex, and it could also lead to an increase in subsequent invasive and possibly dangerous tests for false positives.
The current question is whether there should be any legislation regulating abortions associated with prenatal testing. I find it hard to believe that anyone could justify aborting a fetus solely on the basis of gender, but some genetic abnormalities may warrant an abortion purely for the sake of the fetus. A child born with anencephaly will quickly die after birth.8 Abortion of that fetus would reduce suffering for the baby and emotional distress and physical danger from pregnancy and birth for the mother. However, not every genetic abnormality is so unambiguous. People with Down syndrome can live long and happy lives.9 Given the statistic that 80 to 90 percent of fetuses that test positive for Down syndrome are aborted, it seems that NIPT certainly perpetuates a custom of devaluing individuals with that genetic abnormality. Certainly no one ideally desires to have a child with the learning disabilities and stigma associated with Down syndrome, but does that sentiment warrant such a ritual extermination of fetuses with the disorder? If one treats all fetuses as purely tissue of the mother, then maybe it would. I think most people, though, consider abortion to be a much more complex and tough ethical decision with moral gray areas. If a parent cannot afford to care for the baby or having it would alter the course of her life in a regrettable fashion, then she might be justified in aborting it. On the other hand, if she wants to abort the baby purely on the basis of its possessing the genetic abnormality of Down syndrome, I think her justification leans more towards genetic discrimination.
Lloyd Lewis and Julie Reiskin, members of the Colorado Cross Disability Coalition, wrote an editorial in the Denver Post criticizing the ethics of abortions associated with NIPT.10 Their organization is pro-choice and supports Planned Parenthood, but they can still see the morally questionable attitudes that NIPT can cause. They support an elimination of the testing itself. I think that a wiser choice would be to regulate the abortions associated with NIPT. The government should come up with a comprehensive way to decide which abortions are ethically reasonable as a result of NIPT and set restrictions likewise. The autonomy of the mother to make her own choices about her body is important, but the value our society designates to individuals in the genetic minority is equally important and deserves more attention than it currently has.
References:
Edwin Black, “The Horrifying American Roots of Nazi Eugenics,” History News Network, September 2003, http://historynewsnetwork.org/article/1796.
International Bioethics Committee, “Report of the IBC on Updating Its Reflection on the Human Genome and Human Rights,” (UN report, Paris, 2015), 21-23.
Ibid.
Nivin Todd, “Pregnancy and Amniocentesis,” WebMD, June 8, 2015, http://www.webmd.com/baby/guide/amniocentesis#3.
Oxford Dictionaries, s.v. “Eugenics,” https://en.oxforddictionaries.com/definition/eugenics.
International Bioethics Committee, “Report of the IBC on Updating Its Reflection on the Human Genome and Human Rights,” (UN report, Paris, 2015), 21-23.
Lloyd Lewis and Julie Reiskin, “The Rise of a New Eugenics,” Denver Post, July 2013, http://www.denverpost.com/2013/07/03/the-rise-of-a-new-eugenics/.
“Facts about anencephaly,” CDC, November 2015, http://www.cdc.gov/ncbddd/birthdefects/anencephaly.html.
“What Is Down Syndrome?” National Down Syndrome Society, http://www.ndss.org/down-syndrome/what-is-down-syndrome/.
Lloyd Lewis and Julie Reiskin, “The Rise of a New Eugenics,” Denver Post, July 2013, http://www.denverpost.com/2013/07/03/the-rise-of-a-new-eugenics/.