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

TY - JOUR

T1 - Localizing NIPT: Practices and meanings of non-invasive prenatal testing in China, Italy, Brazil and the UK

AU - Zeng, Xiaofan

AU - Zannoni, Letizia

AU - Löwy, Ilana

AU - Camporesi, Silvia

PY - 2016/9/13

Y1 - 2016/9/13

N2 - 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. 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 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, 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.

AB - 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. 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 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, 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.

KW - non-invasive prenatal testing

KW - NIPT

KW - prenatal screening

KW - bioethics

KW - prenatal diagnosis

KW - prenatal testing

M3 - Article

SN - 2352-5525

JO - Ethics, Medicine and Public Health

JF - Ethics, Medicine and Public Health

ER -