Localizing NIPT: Practices and meanings of non-invasive prenatal testing in China, Italy, Brazil and the UK

Abstract

This paper is the result of a collaborative work between researchers based in UK, Italy, China and Brazil, and aims at providing a comprehensive review of practices and meanings of Non--Invasive Prenatal Testing (NIPT) in these countries, while also highlighting the ethical implications that NIPT poses. In the first part of this paper we describe how the technology is being integrated into the 'moral economy' of prenatal testing in the different countries we analysed. The uses of NIPT differ greatly in the countries we analysed.In the second section of the paper we position NIPT within the trajectory of prenatal diagnosis that, displays the role of conflicting values and often incommensurable moral economies in the emergence of new technologies, and in their transformation into routine medical procedures. The two 'often incommensurable moral economies' are women's autonomy and individual--centred medicine, as emphasised in gynaecologists and midwives/obstetricians' public discourse; and considerations about the cost/efficacy of long--term care for people with Down Syndrome or other chromosomal--related disabilities as emphasized in public health discourses. We discuss how these two contrasting narratives are also at play (more or less covertly) in the discourses around NIPT. We then consider some of the ethical issues raised by NIPT, including the argument that NIPT will lead to a harmful bias towards people with Down Syndrome and to an increase in termination rates; and the ethical issues raised possible incidental findings resulting from a maternal chromosomal mosaicisms due to an anomalous cellular line, and other hidden abnormalities in one of the parents, including genetic diseases with late expressions in life. We note how the counselling step following incidental finding will be of the utmost importance and that in many countries, including the ones we analysed, doctors and healthcare professionals are not adequately prepared for it. We conclude that it is important that bioethics scholarship engages proactively with the ethical issues that arise at the nexus of these conflicting values and moral economies, especially as future evolutions of NIPT combined with whole genome sequencing (WGS) will affect women's reproductive decisions, and shape the scope of their reproductive choices, in a way that will lead to a completely new level of 'supervision', 'management' and 'scrutiny' of human foetuses and pregnant women. Accepted for publication June 30, 2016 Forthcoming September 20163 French key--words (Mot--clefs): diagnostique prénatal, tests prénataux non invasifs, NIPT, maladie génétique French AbstractCet article est le résultat d'une collaboration entre des chercheurs qui ont étudié l'évolution du diagnostique prénatal au Royaume Uni, en Italie, en Chine et au Brésil. Il passe en revue les pratiques liées à l'introduction des tests prénataux non invasifs (NIPT) dans ces pays, et discute les questions éthiques liées à l'introduction de cette nouvelle approche diagnostique. En Chine, en Italie, au Royaume ...

Obstetric professionals’ perceptions of non-invasive prenatal testing for Down syndrome: clinical usefulness compared with existing tests and ethical implications

“…That is, while better knowledge of NIPT could alleviate obstetric professionals’ uncertain ethical concerns, they need to be aware of women’s need for pre- and post-test consultation on NIPT ensuring that women are making informed reproductive choices. Prenatal screening providers’ limited familiarity and experience with NIPT and limited resources to assist with counselling were common barriers encountered when providing women with counselling about NIPT [ 37 ], highlighting the unmet services needs in providing pre- and post-test information on the clinical usefulness and limitations of NIPT [ 38 – 40 ]. Practice guideline for obstetric professionals in both private and public sectors should set out the need for the provision of pre- and post-NIPT information needs to ensure the provision of a service that meets women’s need for information.…”

The First into the Dark: The Nazi Persecution of the Disabled

“…The expectation among some bioethicists is that introducing NIPT will modify rather than 'revolutionise' PGD. 544 The prospect of a more accessible process of genetic manipulation of the species frames the bioethical debate around NIPT as incorporating reproductive rights, disability rights and the historical precedent of twentieth century-eugenics. The at times polarising debate over whether testing in pregnancy properly accommodates disability rights 'tends to manifest as an impasse between disability advocates and test advocates.…”

Imaginaries as infrastructures? The emergence of non-invasive prenatal testing in Austria

“…It can draw our attention to how commercial pioneers might, at times, mobilize extant practices and moralities to establish their place in routine biomedicine, 'infrastructurizing' extant imaginaries while adding on new devices to established routines. The interplay between the new and the old (Gibbon et al 2018), and the local and global, or the contexts in which genomic technologies are adopted and the shape of these technologies, is already well documented, particularly in regard to health care systems and health care infrastructures (Cambrosio et al 2018;Parthasarathy 2012;Aarden 2016;Aarden et al 2009;Zeng et al 2016). However, the case at hand suggests that in our contemporary worlds, such 'contexts' can also take a more subpolitical shape and include elements of broadly shared imaginaries or transnational epistemic networks of biomedical professionals, which might be amenable to be infrastructurized.…”

“…Commercial companies were exceptionally vociferous players in this process (Löwy 2017, p. 152;Ravitsky 2017, p. S36), but they were not alone. Their tinkering with the materiality and morality of NIPT was also shaped by professional societies (Dondorp et al 2015;Benn et al 2013;Salomon et al 2017;Gregg et al 2016), ethics councils (Nuffield Council on Bioethics 2017), state actors (Zeng et al 2016;Karow 2018;Strange 2017) and civil society organizations (Braun and Könninger 2018), who puzzled over the ethical, social, and organizational issues of NIPT and suggested ways in which NIPT ought (not) to be used in practice.…”