The Microphysics of Accountability

Abstract

How is it possible to deploy the law to create and perform accountability? To answer this question, I address the argumentative function of the law in order to legitimize genetic medicine. Using interview data, I will in particular elaborate on how medical experts strive to convince interviewing social scientists that their own professional action is above all ethical reproach. For this purpose, medical experts capitalize on the law in specific ways. It is the aim of this article to expound exactly how this happens during qualitative research interviews. The analysis of the interview data is informed by the works of Sheila Jasanoff and Michel Foucault. The former provides an instructive conceptual background for demonstrating how the law serves as an important element of accountability practices. The latter is known for his plea not to understand the law in repressive terms. Accordingly, the law does not prohibit specific medical practices, but in a specific sense it rather makes medical practice socially robust. Based on qualitative analysis of interview data, I conclude that referring to the law allows experts of genetic medicine to evade engaging with ethical and social aspects of their work. The law was rhetorically utilized to bring a discussion on such issues to a communicative closure. For that purpose, the existence of the law was presented as proof that undesirable practices would not be possible and consequently further discussions of the matter would be unnecessary. The law allows medical experts to transfer ethical problems to other places and actors and also to promote their professional interests.

The Concept of “Genetic Responsibility” and Its Meanings: A Systematic Review of Qualitative Medical Sociology Literature

“…For an assessment in terms of the conceptual use of GR, we looked for conclusive definitions of GR in the studies and tracked quotations and references that might expose a theoretical discussion of GR. While we only found 21 studies offering a conclusive definition of GR (Burgess and d' Agincourt-Canning, 2001;d' Agincourt-Canning, 2001Downing, 2005;Hallowell et al, 2006;Arribas-Ayllon et al, 2008a,b, 2011Bickerstaff et al, 2008;Etchegary and Fowler, 2008;Etchegary et al, 2009Etchegary et al, , 2015Raz and Schicktanz, 2009;Dancyger et al, 2010;Hines et al, 2010;Clarke et al, 2011;Weiner, 2011;Donnelly et al, 2013;Boardman, 2014b;D' Audiffret Van Haecke and de Montgolfier, 2015;Ross, 2015), all but 17 of the included studies made reference to non-empirical literature, such as philosophical or bioethical papers referring to or using GR (cf. Data Sheet 1).…”

“…For example, in the same study, genetic counselors "recognize that the law gives them something to fall back on in 'those rare cases' where patients refuse to warn at-risk relatives (I1), to 'counter refusals when the reasons are as much to do with family feuds, geographic separation, or fear of genetics and the allied denial as anything else' (I7)" [D' Audiffret Van Haecke and de Montgolfier (2015), p. 6]. Other professionals "took the stance that there was no real need to legislate since informing patients of risks to relatives is part of professional duty, and developing disclosure support is part of professional practice ( Non-performance of professional GR was also an important issue in an Austrian study, which found that reference to legal regulations or to the medical code of conduct served as a rhetorical strategy for genetic professionals to repudiate GR in ethical dilemmas (Wieser, 2011). Hinting at the fact that genetic professionals, who are the experts for the issues under legal regulation, contributed to existing legal regulation and hence were at least partly responsible for it, the study revealed their denial of responsibility as morally flawed:…”

“…The second subgroup (C2) addressed professional GR indirectly via the expectations of people, who were genetically at risk, or unaffected people confronted with hypothetical ethical dilemmas (n = 3, code C2) (Burgess, 1994;Haga et al, 2012;Daack-Hirsch et al, 2013). The third subgroup (n = 3, code C3) approached professional GR from a third-party perspective using interview material with physicians involved in genetic medicine to describe paradigm shifts in genetic counseling that affected professional duties and responsibilities (Bogner, 2013), or to argue that healthcare professionals in genetics tended to refer to legal or professional regulations to escape confrontation with their personal responsibilities (Wieser, 2011;D' Audiffret Van Haecke and de Montgolfier, 2015). These studies did not directly address professional GR but indirectly drew conclusions about GR by describing and analyzing the subtext of interview material about physicians' daily practice of genetic medicine.…”

“…Finally, four studies (Hallowell et al, 2006;Arribas-Ayllon et al, 2008a,b, 2011 analyzed GR by focusing on communicative strategies during interviews and counseling sessions, drawing on the "reactive" subtype of the rational/principle-oriented approach to GR. This notion was particularly noteworthy in the work by Arribas-Ayllon et al (2008a,b, 2009.…”

Editorial: Genetic and Genomic Research—Changing Patterns of Accountability

“…It seems that the establishment of legal restrictions and prohibitions relieves the professions of much of the engagement with ethical and social questions. The argument may seem counterintuitive at first glance, but in his contribution to this issue, Wieser shows how it does shape a specific pattern of accountability (Wieser, 2011).…”