Non-Invasive Prenatal Testing (NIPT)

Creating Ethical Dilemmas Before Birth

We know that the ever-expanding permutations of rescue technology complicate treatment decisions for persons who are seriously ill and may be dying.  On the other end of the spectrum, the field of bioethics cut its teeth on dilemmas surrounding imperiled newborns in the 70s and 80s.  Now advancing medical technology is making it possible to struggle with life or death decisions well before birth, and perhaps on a routine basis.  Abortion is and ought to be a fraught decision (Sella 2010).  For women learning of a fetal anomaly in the context of a wanted pregnancy, the decision is a “travesty” (Sandelowski 2005). 

Non-invasive prenatal testing (NIPT) enables more information to be derived more readily and earlier in a pregnancy than ever before.  A positive diagnosis of a fetal anomaly can easily come while the fact of the pregnancy is still closely held (Skotko 2009).  In my own family I recently received news of a long-awaited pregnancy that was already three months along. The dad-to-be said, “We wanted to make sure everything was all right with the baby before we told everyone.” Left unsaid was the real possibility that if NIPT had revealed bad news, they might have chosen to terminate the pregnancy quietly. 

The lack of daylight between NIPT and abortion causes some to argue that the push for reliable testing as early in the pregnancy as possible has a eugenic agenda (Thomas and Rothman 2016).  The proof, for them, is in the pudding: fewer Down Syndrome babies is one outcome (Skotko 2009).  More complete knowledge early in the pregnancy serves a variety of motives from parental, medical, societal and reimbursement perspectives, and the urgency for it is unlikely to abate.

Just how many abortions can be linked to fetal anomaly may be difficult to know.  Research estimates 13% in the US (Finer et al 2005).  But women are not required to disclose their reasons for seeking to end a pregnancy, so statistics may be unreliable (Allen 2017).  Very divergent life circumstances for the woman, the family, and the fetus bring people face to face with a decision to terminate.  As long as some states feel duty-bound to legislate on behalf of the fetus, the gateways to abortion will be narrow and fully manned, even as full throated support for vulnerable newborns and children may be muted (Mernit 2012).

Pregnancy termination for reasons of fetal anomaly does not often appear in the press coverage of the abortion controversy.  Nine states have attempted to ban abortion or the offering of information about abortion in cases of genetic anomaly (Guttmacher 2019).  As several other states have constrained or eliminated access to abortion in recent months, logic dictates that more children with special needs could be born, whether or not their families are willing and able to care for them.  In what ways are they to be welcomed?  While eugenics warnings have been raised, right to life groups seem not to have jumped on this particular bandwagon (Students for Life for America (2019) is an exception). Access to comprehensive prenatal care may not convey awareness of the dilemmas created by “routine” testing, regardless of meticulous informed consent (Tsuge 2016).  Devastated by a detected anomaly, women look around and notice that their struggles have just begun.  They can run the gauntlet of a stigmatized ending to the pregnancy.  They can arrange for perinatal hospice in case of a terminal diagnosis, should they decide to carry the pregnancy to term.  Or they face giving birth to a special needs child within a society that undervalues the contributions and dependence of these youngsters and fails to guarantee basic health care and other supports.  The use of NIPT connects inevitably to a disposition in US society that may wish to “cure” the “disease” of disability by eliminating those bearing it ahead of their appearance among us (Wasserman and Asch 2006).  Perhaps the real prize in US society is not life itself before or after birth, but rather the technology that allows us to exercise our cherished autonomy to disavow what differs from our ideal.

Helen Stanton Chapple, PhD, RN, MA, MSN, is a Professor in the Interdisciplinary Studies Department and College of Nursing at Creighton University.
 

References

1. Allen, S. (2016, April 11). Fetal Anomaly is the Most Extreme Abortion Bill Yet [Daily Beast]. Retrieved from https://www.thedailybeast.com/fetal-anomaly-is-the-most-extreme-abortion-bill-yet
2. Finer, L. B., Frohwirth, L. F., Dauphinee, L. A., Singh, S., & Moore, A. M. (2005). Reasons U.S. Women Have Abortions: Quantitative and Qualitative Perspectives. Perspectives on Sexual and Reproductive Health, 37(3), 110–118.
3. Guttmacher Institute. (2019). Abortion Bans in Case of Race or Sex Selection or Genetic Anomaly (State Laws and Policies). New York, NY: Guttmacher Institute. Retrieved from https://www.guttmacher.org/state-policy/explore/abortion-bans-cases-sex-or-race-selection-or-genetic-anomaly
4. Mernit, J. L. (2012, May 29). The Pro-Life Paradox. Retrieved from https://prospect.org/article/pro-life-paradox
5. Sandelowski, M., & Barroso, J. (2005). The Travesty of Choosing after Positive Prenatal Diagnosis. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 34(3), 307–318.
6. Sella, S. (2010). Maternal Indications. Atrium, (8), 1–3.
7. Skotko, B. G. (2009). With New Prenatal Testing, Will Babies with Down Syndrome Slowly Disappear? Archives of Disease in Childhood, 94(11), 823–826.
8. Students for Life of America. (2019). Prenatal Diagnosis and Fetal Anomaly. Retrieved from https://studentsforlife.org/high-school/fetal-anomaly/
9. Thomas, G. M., & Rothman, B. K. (2016). Keeping the Back Door to Eugenics Ajar? Disability and the Future of Prenatal Screening. AMA Journal of Ethics, 18(4), 406–415.
10. Tsuge, A. (2016). Ethical and Social Implications of Current Prenatal Genetic Testing. Journal of Mammalian Ova Research, 33(2), 109–113.
11. Wasserman, D., & Asch, A. (2006). The Uncertain Rationale for Prenatal Disability Screening. AMA Journal of Ethics, 8(1), 53–56.