Representing and intervening: ‘doing’ good care in first trimester prenatal knowledge production and decision‐making

Abstract

This article investigates processes of knowledge production and decision-making in the practice of the first trimester prenatal risk assessment (FTPRA) at an ultrasound clinic in Denmark. On the basis of ethnographic material and interviews with professionals facilitating FTPRAs in Denmark, we draw attention to the active engagement of health professionals in this process. Current professional and policy debate over the use of prenatal testing emphasises the need for informed choice making and for services that provide prospective parents with what is referred to as 'non-directive counselling'. Studies focusing on professional practice of prenatal counselling tend to deal mainly with how professionals fail to live up to such ideals in practice. In this article we extend such studies by drawing attention to practices of care in prenatal testing and counselling. In doing so, we identify three modes of 'doing' good care: attuning expectations and knowledge, allowing resistance and providing situated influence in the relationship between the pregnant woman and the professional. Such practices may not be seen as immediately compatible with the non-directive ethos, but they express ways of reducing emotional suffering and supporting a pregnant woman's ability to make meaningful choices on the basis of uncertain knowledge. As such, these practices can be seen as representing another (caring) solution to the problem of paternalism and authoritarian power. In opposition to an ethics aiming at non-interference (non-directiveness) such modes of doing good care express an ethics of being locally accountable for the ways in which programmes of prenatal testing intervene in pregnant women's lives and of taking responsibility for the entities and phenomena that emerge through such knowledge production.

Planning parenthood: Health care providers' perspectives on pregnancy intention, readiness, and family planning

“…Providers are an important site of investigation, as reproductive health care in the twenty-first century has been marked by a curious blend of non-directive counseling, which seeks to emphasize patients' informed choice and autonomy (Schwennesen and Koch, 2012;Williams, 2006), and lingering paternalism (Bell, 2010;Lupton, 2012). Current scholarship finds a lack of engagement between providers and patients during contraceptive counseling.…”

“It just becomes much more complicated”: Genetic counselors' views on genetics and prenatal testing

“…There is understandably much debate within social science research, as well as the genetic counseling profession itself, about the usefulness of nondirectiveness and genetic counselors' actual engagement with it (Brunger and Lippman 1995;Bartels et al 1997;Williams, Alderson, and Farsides 2002a;Bennett et al 2003;Resta 2006;Weil et al 2006;Schwennesen and Koch 2012;Markens 2013). On the one hand, the fact that nondirectiveness is a guiding principle of the profession may facilitate that their specialized knowledge and professional positions are not used in authoritative and coercive ways.…”

“…For instance, qualitative studies on "genetic counselors," as well as comparative survey and opinion research, usually investigates the work practices and views of health professionals other than the board-certified genetic counselor who is becoming increasingly prevalent in the USA (Wertz and Fletcher 1988a, 1988b, 1989Bosk 1992;Michie et al 1998;Farsides, 2002a, 2002b;Hashiloni-Dolev 2006;Samerski 2006;Kerr, CunninghamBurley, and Tutton 2007;Samerski 2009;Hashiloni-Dolev and Raz 2010;Arribas-Ayllon, Sarangis, and Clarke 2011;Schwennesen and Koch 2012). Another limit of previous research that examines genetic counselors is that much of the work on genetic counseling is centered on patients' understandings and experiences (Hallowell 1999;Featherstone et al 2006, McAllister et al 2011; thus, studies of prenatal genetic counseling, for instance, are usually part of a larger project in which the analytic focus is on the pregnant woman (Rothman 1986;Kolker and Burke 1994;Press and Browner 1997;Rapp 1999;Pilnick 2008;Samerski 2009).…”

“…Ethnographic studies on the genetic counseling process tend to focus on how genetic counselors actively negotiate and have difficulty living up to professional and ethical ideals, particularly the professional norm of nondirectiveness -to provide information and options, but not to "advise" (Karlberg 2000;Williams, Alderson, and Farsides 2002a;Pilnick 2002aPilnick , 2002bHashiloni-Dolev 2006;Schwennesen and Koch 2012). Yet, less attention is paid in this research to how genetic counselors view the impact of genetic knowledge and the availability of genetic testing at the personal as well as the population level.…”

Selective Reproductive Technologies

“…In some countries, prenatal screening has been rolled out through state-funded health-delivery systems, whereas in others couples must pay for these services out of pocket (Müller-Rockstroh 2007, Gammeltoft 2008, Schwennesen & Koch 2009, UNFPA 2011. Denmark and Finland are among the first countries in the world to implement a government-funded prenatal screening program covering all pregnant women regardless of their risk status (Schwennesen & Koch 2012). In countries such as China, India, and Vietnam, on the other hand, where national health care coverage is not universal and most services are funded through user fees, a "street corner sonography" has emerged in many cities and towns and the services are advertised on billboards and at clinic gates.…”