The eugenics debate: How Iceland has eradicated Down syndrome, and the moral implications of the legislation
Through technologies introduced in the late 20th century, prenatal genetic screening for disabilities in fetuses, including Down syndrome, is becoming a common practice.
According to the June 27, 2011, article “Genetic Screening,” by Burke, et al., screening is medically defined as the evaluation of asymptomatic people to detect an unsuspected disease or risk, specifically in order to improve future health.
Screening can happen on a multitude of different levels, including prenatal, infant and reproductive genetic screening in order to detect carriers of diseases before conception, according to Burke, et al.
Prenatal screening for the specific disease of Down syndrome began in the 1960s and continues to advance to this day, according to the 2015 Brandeis University ethical inquiry, “The ethics of prenatal testing for Down syndrome: is knowing always better?”
Two types of prenatal testing are available and recommended by the American College of Obstetricians and Gynecologists.
These types include prenatal screening, which predicts Down syndrome probability, and diagnostic tests, which carry an almost 100 percent accuracy rate of detection.
Both benefits and concerns come with testing for Down syndrome. Some benefits include parent choice and better preparation, while discrimination toward those with Down syndrome or inadequate information are concerns, according to Brandeis University.
Down syndrome screening is available in nearly all developed countries, but Iceland has taken it further than others.
Icelandic law requires that all expecting mothers be informed of the availability of tests to determine whether a child will have Down syndrome, according to the CBS News article, “‘What kind of society do you want to live in?’: Inside the country where Down syndrome is disappearing,” by Julian Quinones and Arijeta Lajika.
According to John Rudisill, a professor of philosophy at the College of Wooster, there are arguments to be made that more information on the health of a fetus is better and that prospective parents should choose if they need or want testing, as for many, test results would not affect their decisions on keeping a child.
Since the introduction of optional testing in the early 2000s, around 80 to 85 percent of women in Iceland have chosen to use the Combination test to detect possible Down syndrome. The test includes an ultrasound, blood test and knowledge of the mother’s age, according to the aforementioned CBS News article.
Nearly 100 percent of women in Iceland terminated their pregnancies after receiving a positive test for Down syndrome according to the same article.
Laws in Iceland also allow for abortions up to 16 weeks if a fetus has a deformity, including Down syndrome, the CBS News article continued. These laws are in part responsible for the high abortion rate of fetuses with Down syndrome in Iceland.
While Iceland is at a nearly 100 percent abortion rate of fetuses with Down syndrome, other countries are not far behind, with Denmark at 98 percent, France at 77 and the United States at 67 percent, according to data presented in the CBS article.
At the same time, the United States has taken a very different approach to abortions of fetuses with Down syndrome.
On July 13, a bill was introduced to the Ohio Senate, sponsored by Senator LaRose, that would ban abortions of fetuses solely for finding they displayed genes for Down syndrome, according to a bill analysis by the Ohio Legislative Service Commission. According to the analysis, the bill would make performing an abortion due solely to Down syndrome a fourth-degree felony for the doctor performing the abortion, accompanied by a revocation of that doctor’s medical license. The bill would impose no penalties on the woman seeking the abortion.
Two other states have already imposed such bans.
Thomas Tierney, professor of sociology and anthropology at the College of Wooster, said the law is currently being justified in part by saying abortions on the basis of Down syndrome alone are a form of discrimination.
However, Tierney added, “While I take seriously the concerns that disability rights activists raise about market eugenics, to the best of my knowledge the National Down Syndrome Society has not taken a position on laws like the one Ohio is considering. From my perspective, rather than an abortion ban, a better way to address the concerns raised by disabled rights activists is to ensure that individuals who face these reproductive decisions are provided non-directive information by professional genetic counselors about the challenges, benefits and social implications (including a discussion of market eugenics) of these very difficult, personal decisions.”
Iceland and the United States have taken action on Down syndrome abortions on extremely different sides of the spectrum, inciting extremely different reactions for each.