Qualifying choice: ethical reflection on the scope of prenatal screening

Abstract

In the near future developments in non-invasive prenatal testing (NIPT) may soon provide couples with the opportunity to test for and diagnose a much broader range of heritable and congenital conditions than has previously been possible. Inevitably, this has prompted much ethical debate on the possible implications of NIPT for providing couples with opportunities for reproductive choice by way of routine prenatal screening. In view of the possibility to test for a significantly broader range of genetic conditions with NIPT, the European Society of Human Genetics (ESHG) and American Society of Human Genetics (ASHG) recommend that, pending further debate, prenatal screening for reproductive choice should only be offered where concerning serious congenital conditions and childhood disorders. In support of this recommendation, the ESHG and ASHG discuss a number of ethical issues on which they prompt further debate: the informational privacy of the future child, the trivialization of abortion, the risk of information overload, and issues of distributive justice. This paper responds to this call with further reflection on each ethical issue and how it relates to the moral justification of providing couples with opportunities for meaningful reproductive choice. The paper concludes that whilst there may be good reasons for qualifying the scope of any unsolicited prenatal screening offer to serious congenital conditions and childhood disorders, if prenatal screening is justified for providing couples with opportunities for meaningful reproductive choice, then health services may have obligations to empower couples with the same opportunity where concerning other conditions.

A Capabilities Approach to Prenatal Screening for Fetal Abnormalities

“…Yet precisely at this point the atypical aim of prenatal screening for fetal abnormalities makes an important difference. As the aim of this type of screening is defined using the more subjective criteria of enabling participants in making reproductive choices that are important to them, the assessment of its scope is much more challenging [12,13,23,44]. Thus, to account for this we will often refer to prenatal screening according to its aim and leave its scope open for further analysis.…”

“…Building upon this idea it is possible to justify the provision of goods and services that enable women to make informed decisions of this kind. Although this appears relatively coherent with the aim of offering prenatal screening for fetal abnormalities, as stated within international guidelines, its implications for the scope of the screening offer require some clarification [13,44]. The main concern highlighted above is that women are enabled to make reproductive decisions that are informed of any significant risks that continuing pregnancy may have for their life and bodily health.…”

“…Although this position appears to be widely endorsed, developments in cell-free fetal DNA based non-invasive prenatal testing (NIPT) are now stimulating considerable debate within the bioethics literature about its continued suitability for guiding screening policy and practice. The main criticism of the framework appears to be that the autonomy-based benefit ascribed to the screening service provides limited guidance to policy makers with respect to how its performance might be evaluated [12,13,23,44]. This issue seems most problematic where concerning the scope of the screening offer.…”

“…Notably, ethical debate on this issue has yet to produce a suitable framework that can be used by policy makers to assess the performance of the screening service in light of the different genetic conditions for which it is offered [12,13,23,44]. In this paper we try to address this issue by using the capabilities approach to further specify the non-directive aim of enabling women in making meaningful reproductive choices.…”

Noninvasive prenatal testing to analyze the fetal genome

“…With expansion of the range of conditions that can now be detected prenatally, these debates have seen renewed vigor (16). Such discussions usually focus on abortion, and concern that pregnancies will be terminated because of lesssevere conditions or because of excess maternal anxiety over variants of uncertain significance.…”