Unravelling the concept of ‘routinization’ in prenatal screening

By Adriana Kater-Kuipers & Eline M. Bunnik.

With the introduction of the non-invasive prenatal test (NIPT) the ethical debate about prenatal screening is again in full swing. The new technique for the analysis of cell-free foetal DNA for trisomy 21, 18, and 13, and, in the future, possibly for a range of other abnormalities, requires only a simple maternal blood draw. It is thus safe and easy, and it is more reliable than the current first-trimester combined test (FCT). While these favourable test characteristics make NIPT attractive to pregnant women and couples, they also raise ethical concerns. It is feared that the test may be ‘too easy’, which may influence the way the test is perceived and presented, namely as a routine offer, accepted by pregnant women as a matter of course. This might hamper the informed choice of women, and eventually lead to societal pressure to test. Such concerns are often referred to as routinization of prenatal screening and used as arguments against the introduction, expansion or wide availability of NIPT.

Routinization is an umbrella term. Using umbrella terms as arguments in ethical discussions is usually not productive, as such terms are often unclear about the problem that is really being referred to. When problems are not clearly defined, it is difficult to devise or assess possible solutions. Moreover, routinization is often a slippery slope argument undercover.

In our paper we set out to map the various meanings of the term routinization as it is used in the ethical and psychosocial literature on prenatal screening, and to examine the validity of routinization as an argument in the debate about the responsible implementation of NIPT. Three of the strongest arguments raised under the flag of routinization are the threat that NIPT poses to informed choice, the potential increase in uptake of first-trimester prenatal screening and its consequences for women’s freedom to refuse participation in screening or termination of an affected pregnancy, and potential negative consequences of NIPT for disabled people.

First, in contrast to FCT, NIPT is perceived by many women as a one-step process rather than a multi-step process: with FCT, women are offered risk estimates for trisomies 21, 18, and 13, while NIPT is seen as providing a yes-or-no answer. It is feared that NIPT may not prompt women to deliberate their choice for or against prenatal screening. However, although NIPT is more reliable than FCT, it is not a one-step process; invasive follow-up testing is still required to confirm the diagnosis. Moreover, recent empirical studies do not suggest any dramatic effects of NIPT on the quality of women’s choices. The introduction of NIPT may nevertheless offer an opportunity to – again – raise choice awareness among pregnant women and their partners, and to focus pre-test counseling efforts on deliberation and careful consideration of the implications of NIPT beforehand.

The second argument is that NIPT leads to social pressure to test: as NIPT is free from the (small) risk of miscarriage that is associated with invasive testing, it is thought, women no longer have any reason not to participate in screening, and this may exacerbate social pressure to test. This argument lacks empirical ground: in qualitative and quantitative studies, women expressed various reasons not to opt for screening (e.g. they knew they would not terminate an affected pregnancy), and did not report experiencing any pressure. Freedom from pressure is of paramount importance for prenatal screening programmes to reach their goal: reproductive autonomy. As we argue in our paper, reproductive autonomy can only exist in the context of variegated, real and valuable options, so that expecting parents can continue to choose whether or not to screen and whether or not to terminate a pregnancy. The effects of public attitudes towards chromosomal abnormalities and their ethical implications should be monitored over the next couple of years.

The third routinization argument is the concern that NIPT stigmatizes people with disabilities, leads to a reduction of children born with a disability or to impoverished care for such children. There is little evidence for the claim that NIPT will affect abortion rates or the quality of care for people with disabilities. Around the world, women and their partners use screening for information purposes and deliberately choose to continue affected pregnancies. The technique used – FCT or NIPT – need not change this.

Many routinization arguments are slippery slope arguments, pointing to the fear that all women will thoughtlessly accept prenatal screening offers, that all affected pregnancies will be terminated, or that Down syndrome will disappear from our societies. There is currently little empirical support for these claims. However, as with all slippery slopes, getting a good grip on the ground underfoot is important. And so the effects of the introduction of NIPT on women’s freedom to choose should be observed closely, to ensure reproductive autonomy.

 

Paper title: The ethics of routine: A critical analysis of the concept of ‘routinization’ in prenatal screening

Authors: Adriana Kater-Kuipers1, Inez D. de Beaufort1, Robert-Jan H. Galjaard2*, Eline M. Bunnik1*

Affiliations:

1 Department of Medical Ethics and Philosophy of Medicine, Erasmus MC, University Medical Centre Rotterdam, Rotterdam, The Netherlands

2 Department of Clinical Genetics, Erasmus MC, University Medical Centre Rotterdam, Rotterdam, The Netherlands

* Galjaard and Bunnik contributed equally

Competing interests: The authors declare that they have no competing interests.

Social media accounts of post authors:

https://www.researchgate.net/profile/Eline_Bunnik

https://www.linkedin.com/in/eline-bunnik-b016b915/?originalSubdomain=nl

https://www.linkedin.com/in/adriana-kater-57b058115/

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