Ethics and Prenatal Screening: A Round-Up of Recent Developments
Megan Allyse and Marsha Michie
Ethics and Prenatal Screening SIG Chairs
The perspectives of people with Down syndrome and their families have received increased attention in the past few months. In December, The Atlantic published a lengthy piece on prenatal screening for Down syndrome in Denmark, where the pregnancy termination rate after prenatal detection of Down syndrome is 95%. Denmark also offers universal access to prenatal screening for Down syndrome and nearly all expecting individuals accept. Journalist Sarah Zhang interviews Grete Fält-Hansen, whose son has Down syndrome, and other advocates and physicians in both Denmark and the United States, in The Last Children of Down Syndrome.
In Australia, the first ABC television network host living with Down syndrome has filmed a documentary called The Upside, exploring perceptions of various stakeholders on the value and ethical implications of prenatal screening for Down syndrome. Among the interviews is one in which the host, Julia Hales, asks an obstetrician if doctors are “scared” of talking to families about the risk of Down syndrome. He replies that “doctors are afraid of missing a diagnosis of Down syndrome and … I think a fear of litigation is a real concern.” In her review of the episode, Marleen Susman explores the implications of this answer and how it can be situated in the history of prenatal screening. Australia decided against a Medicaid code for NIP screening because it was not judged cost-effective.
A bioethics advisory committee in Belgium has issued a report recommending against the widespread use of NIP screening for detection of risk for sex chromosome aneuploidies, including Turner syndrome, Klinefelter syndrome, Trisomy X, and XYY phenotype. Belgium is one of the few countries in which NIP screening is fully reimbursed and uptake for Down syndrome risk has been strong. However, the committee’s report points out that the positive predictive value for sex chromosome aneuploidies is significantly lower and requires confirmation with amniocentesis. They also argue that because of the highly variable phenotypes of sex chromosome aneuploidies, the clinical and personal utility of NIP screening is uncertain.
Meanwhile, the Japanese government is cracking down on provision of NIP screening in response to a boom in non-authorized facilities, including beauty clinics, offering the screen. The Japanese Society of Obstetrics and Gynecology had previously recommended offering NIP screening to more women, but quickly received backlash from a society in which the shadows of eugenics loom large. Although authorized hospitals have offered the screening for several years, it has almost never been covered by insurance and requires the active consent of both partners.
Finally, in the United States, the Sixth Circuit Court of Appeals has upheld a bill in the state of Ohio that would prohibit a provider from providing abortion services if they are aware that the patient is seeking an abortion based on a fetal diagnosis of Down syndrome. The Court ruled that because patients could mislead their provider about the motivation for the abortion, the law did not violate patient’s rights to abortion access. A lower Court had previously found in favor of a suit brought by Ohio-based abortion providers that claimed the bill would place an undue burden on patients seeking abortions and disincentivize honest communication between patients and their providers. The finding is in conflict with a decision by a Seventh Circuit Court that ruled a similar law in Indiana unconstitutional. The decision was hailed as victory by anti-abortion activists. The split between the Courts means that the case may soon go to the United States Supreme Court, which has signaled that it may be open to overturning the federally-guaranteed right to abortion.