Implementation challenges for an ethical introduction of noninvasive prenatal testing: a qualitative study of healthcare professionals’ views from Lebanon and Quebec

Abstract

Background:The clinical introduction of non-invasive prenatal testing for fetal aneuploidies is currently transforming the landscape of prenatal screening in many countries. Since it is noninvasive, safe and allows the early detection of abnormalities, NIPT expanded rapidly and the test is currently commercially available in most of the world. As NIPT is being introduced globally, its clinical implementation should consider various challenges, including the role of the surrounding social and cultural contexts. We conducted a qualitative study with healthcare professionals in Lebanon and Quebec as case studies, to highlight the relevance of cultural contexts and to explore the concerns that should be taken into account for an ethical implementation of NIPT.Methods: We conducted semi-structured interviews with 20 healthcare professionals (HCPs), 10 from each country, practicing in the field of prenatal screening and follow up diagnostic testing, including obstetricians and gynecologists, nurses, medical geneticists and, genetic counselors. We aimed to 1) explore HCPs' perceptions and views regarding issues raised by NIPT and 2) to shed light on ways in which the introduction of the same technology (NIPT) in two different contexts (Lebanon and Quebec) raises common and different challenges that are influenced by the cultural norms and legal policies in place. Results:We identified challenges to the ethical implementation of NIPT. Some are common to both contexts, including financial/economic, social, and organizational/ educational challenges. Others are specific to each context. For example, challenges for Lebanon include abortion policy and financial profit, and in Quebec challenges include lobbying by Disability rights associations and geographical access to NIPT.Conclusions: Our findings highlight the need to consider specific issues related to various cultural contexts when developing frameworks that can guide an ethically sound implementation of NIPT. Further, they show that healthcare professional education and training remain paramount in order to provide NIPT counseling in a way that supports pregnant women and couples' choice.

Comparing Germany and Israel regarding debates on policy-making at the beginning of life: PGD, NIPT and their paths of routinization

“…the sick child. Another argument was that parents could feel pressured to be "good parents" to create such a child (see also Habermas 2003;Henning 2014;Schües 2017).…”

“…PGD, the "older" of these two technologies, has generated a range of conflicting responses to fictional scenarios: It has been praised in the general context of "procreative beneficence" (Savulescu 2001;Harris 1998), criticized as a new form of eugenics undermining moral equality and self-determination (Habermas 2003;Sandel 2007) or leading to the commodification of "babies by design" (Woopen 1999;Benedict XVI, Sovereign Pontiff 2008). Germany and Israel represent substantial cross-cultural differences in the regulatory frameworks of PGD in general.…”

“…To further demonstrate and explore the diversity in regulation and moral evaluation in the context of prenatal screening (Asch and Barlevy 2012;Parens and Asch 2000;Reynolds 2003) we focus also on the new technology of non-invasive genetic testing (NIPT; Labonté et al 2019). As NIPT is being introduced globally, its clinical implementation reinvokes various challenges, including the disability critique on prenatal screening, informed choice of women, information overload, and access (Ravitsky et al 2021;Haidar et al 2020;Labonté et al 2019;Griffin et al 2018). While NIPT was criticized by German disability rights groups as well as some health organizations and Christian groups (see later), in Israel there has been no public debate about it.…”

Implementing Publicly Funded Noninvasive Prenatal Testing for Fetal Aneuploidy in Ontario, Canada: Clinician Experiences With a Disruptive Technology

“…Overall, the quick implementation of NIPT without system, clinician, or patient supports has resulted in inequitable distribution in the health care system. This could be ameliorated with appropriate education and guidance for both clinicians and patients, as well as funding policies which focus on reducing disparities in access and addressing other effects on clinician wellness and patient care (Haidar et al, 2020;Vanstone et al, 2014Vanstone et al, , 2018. Accountability to the effects of a medical innovation steers us away from a technological deterministic perspective in which technology is believed to develop autonomously and without impact from societal factors (Williams & Edge, 1996).…”

Ethical, Legal and Social Issues (ELSI) Associated with Non-Invasive Prenatal Testing: Reflections on the Evolution of Prenatal Diagnosis and Procreative Choices

“…Such a dynamic would in turn likely lead to a considerable reduction in the incidence of certain genetic conditions overall [ 37 ], and to fewer losses of normal pregnancies [ 38 ]. Quite possibly, such a development may be viewed by some as beneficial from the standpoint of public health, particularly in terms of bringing down the health care costs associated with disabilities [ 39 ]; still, studies have denounced the risk of creating even worse stigmatization and discrimination against those who live with such syndromes through no fault of their own [ 40 ]. In fact, some fear that the broad availability of NIPT would give rise to high social pressure on women who choose to give birth to a child suffering from genetic syndromes detectable by NIPT.…”