Personalized ethics: The emergence and the effects in prenatal testing

Abstract

Prenatal testing for congenital anomalies and genetic diseases is a recurring topic for social scientific research on biomedicine. In this research, the question of ethics is often examined in terms of discrepancies between abstract bioethical principles and individuals' grounded experiences. This article aims to contribute to discussions of the ethics of prenatal testing by drawing from a 'Foucauldian' analysis of ethical practices in specific historical settings that involve forms of technology, politics and personal reflection. On the basis of an empirical study in a Nordic welfare state setting, that of Finland, the first part of the article presents a short genealogy on how clinical geneticists' problematizations concerning selective abortion and disability have been translated into a form of ethics that I characterize as 'personalized'. The concept of 'personalized ethics' is explored to highlight a transformation in the ethical rationales pertaining to prenatal testing from a profession-centred code of conduct into a matter of personal ethical deliberation. The second part of the article discusses pregnant women's experiences of prenatal testing. A salient effect of practicing personalized ethics, I propose, is that new local moral worlds emerge where women turn to their peers for moral acceptance and some shared ethical grounds to cope with the decisions expected of them.

Choice, Rights, and Virtue: Prenatal Testing and Styles of Moral Reasoning in Aotearoa/New Zealand

“…An additional and unintended outcome of our use of a biopower analytic to explore moral reasoning styles has been the capacity to engage in comparative studies of the state's effects on citizen's moral reasoning (and vice versa) between New Zealand, Finland (Meskus ), and Iceland (Gottfreðsdóttir and Árnason ). In each of these three studies, the discourses of moral reasoning in the emergent social collectivities are quite different—a zone of exclusion in Iceland, what Meskus () terms “personalised bioethics” in Finland, and the currently presented virtue ethics and citizen's rights–based discourses in New Zealand. This is the case even though in all three sites a principalist approach to ethical decision‐making was the initial thrust of the state‐led discourse.…”

“…One recent exception is the work of Meskus (), who takes a genealogical approach to the study of the ethical governance of prenatal testing in Finland, arguing that the state has shifted from a professional centered discourse based on principalist ethics to a “personalised ethics,” in which women debate with peers (rather than contemplate alone) the framing of an appropriate response to their situation. Instead of changing its discursive strategies, the state may also retreat from regulating testing, as can be observed in the Icelandic study by Gottfreðsdóttir and Árnason () of decision‐making around prenatal screening.…”

“…The moral frontier is now also highly territorialized by variable national screening programs, proliferating types of reprogenic testing technologies, and most importantly, reflexive commentary via the new and traditional media, support, and activist groups. In New Zealand, this territorialization creates a multitude of “new social collectivities” (Rabinow and Rose :197), in which moral pioneers can both freely communicate and debate their decision‐making while also being held accountable for it (a change noted also by Meskus [] in Finland). The support groups explored in a later section of this article provide examples of these new social collectivities and the opportunities they offer for extended self work on one's moral reasoning and some examples in which these groups have impressed their own moral reasoning positions onto the dominant state discourse of principalism within New Zealand's bioethical complex.…”

Moving Towards Routine Non-Invasive Prenatal Testing (NIPT): Challenges Related to Women’s Autonomy

“…At its inception in the 60's and 70's, prenatal screening was presented as a means of preventing disease and "mental retardation" [10]. It is only in the 90's that the concept of reproductive autonomy became dominant in the discourse concerning prenatal screening.…”

“…It is only in the 90's that the concept of reproductive autonomy became dominant in the discourse concerning prenatal screening. Following criticism from feminist and disability rights activists, the various professional bodies involved in providing prenatal screening services distanced themselves from accusations of eugenic practices by framing prenatal screening as a matter of personal choice regarding one's life as opposed to a matter of public health [10].…”