Abstract
Prenatal genetic testing allows potential parents to screen for and diagnose an ever-increasing number of conditions. However, because there is no treatment for the majority of currently detectable conditions, the information from testing opens the door to selective termination, which some in the disability community consider morally problematic. The genetic counseling profession has responded to the disability critique of prenatal testing by working to decrease biased language and attitudes among genetic counselors so that clients can make genuinely autonomous reproductive decisions. However, I argue that an important dimension of the moral issue is lost when framed primarily in terms of autonomy and reproductive choice. Looking to the relational underpinnings of autonomy in solidarity may shed greater light on the tension between the disability community and the genetic counseling profession. I consider the role of the concept of solidarity for explaining past responses to the disability critique of prenatal testing and for imagining a future response grounded in historical memory.
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Notes
- 1.
Historically, genetic counselors have used the term “client” rather than “patient” because the psychosocial aspects of the profession derive from Rogerian client-centered therapy and because many founding figures in the profession were Ph.D.s rather than M.D.s, and wanted to make clear that they did not claim to be treating sick patients. Today, genetic counselors tend to use the terms interchangeably. I use the term “client” out of respect for the original intention.
- 2.
See Prainsack and Buyx 2012 for an in depth analysis of the uses of the term solidarity in bioethics literature.
- 3.
There is an enormous body of literature on ethical theories that critique excessive individualism and prioritize relationships. See, for instance, the ethics of care developed by Carol Gilligan (1982) and Nel Noddings (1984). Many contemporary analyses by phenomenologists, feminists, postmodernists, social-justice theorists, cultural theorists, etc., start from the notion that individual relationships constitute or are prior to the individual. See, for instance, Mackenzie and Stolijar (2000), “Relational Autonomy: Feminist Perspectives of Autonomy, Agency, and the Social Self.” See also Kenny et al. (2010) for a summary of the inadequacies of the dominant individualistic approach and a discussion of relational autonomy, relational social justice, and relational solidarity in the context of public health.
- 4.
I follow Adrienne Asch in using the term to include “all health-related departures from species-typical functioning” (Asch 2003: 319, Note 10). See also the definition of disability in the Americans with Disability Act of 1990. While I will use broad terms such as disability community and disability movement, I am aware that groups “are not unified monoliths,” as Joseph Stramondo puts it prior to clarifying his intention to use the term “disability movement.” He writes, “This term is deliberately broad and meant to encompass the substantial range of sometimes divergent tactics and ideologies deployed by disabled people, but it is not assumed that all disabled people engage in such action, have the same political beliefs, or use identical advocacy approaches. In addition, while the lived reality of disability is an important feature of my argument, the ‘disability movement’ is not simple shorthand for people who experience life with an anomalous embodiment or medical impairment but instead refers to a particular subset of disabled people who are conscious of their own subordinate social position and engage in political action accordingly” (Stramondo 2016).
- 5.
The claim that there is a “message” communicated in the offering of or existence of prenatal genetic tests is best understood in the context of the contrast between the medical and social models of disability. If much of the reason why people with disabilities are un-able is rooted in the lack of societal accommodation, then offering prenatal testing conveys a message that society would rather address the challenges associated with disabilities by preventing people with disabilities from being born rather than taking measures to improve institutions and practices that could enhance the lives of people with disabilities. See Asch 2003, “Disability Equality” in Prenatal Testing. See also Susan Wendell (1996) who says selective abortion sends the message that “we do not want any more like you” (in The Rejected Body).
- 6.
Early genetic counselors were men, but by the 1970s most counselors were white, middle-upper class women; and, according to a 2010 survey by National Society of Genetic Counselors (NSGC) women still make up 95% of the field, with 92% identifying as white or Caucasian (Stern 2012: 25–26). See also p. 74 for a discussion of Nancy Steinberg Warren’s 2004 organized retreats on challenges to diversifying the profession.
- 7.
For a history of how non-directiveness became central to the profession of genetic counseling see Stern, Telling Genes, 2012, especially Chap. 6, where she outlines the convergence of several distinct aspects: The development of client-centered counseling by Carl Rogers; Sheldon Reed’s choice of the term client rather than patient as the subject of genetic counseling; the birth of bioethics as a discipline, along with its particular focus on client autonomy as response to past abuses (human experimentation, paternalism, etc. Interesting, the noun “non-directiveness” did not enter the literature until the 1980s, when it became part of a “form of professional identity construction” (144); See also James Sorenson, “Genetic Counseling: Values That Have Mattered,” for a discussion of the different values that structured the field as it transitioned from eugenics, to medical genetics, to genetic counseling performed by masters-trained professionals.
- 8.
See Resta (1997) “Eugenics and Nondirectiveness in Genetic Counseling,” p. 256.
- 9.
It should be noted that these studies include physicians, not genetic counselors, and non-directiveness is not generally considered a cornerstone of physician practice. Some studies show that women were less likely to terminate if they received information about aneuploidy from a geneticist or genetic counselor rather than an obstetrician. See Munger et al. 2007.
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Gabriel, J. (2017). Zooming Out: Solidarity in the Moral Imagination of Genetic Counseling. In: Campo-Engelstein, L., Burcher, P. (eds) Reproductive Ethics. Springer, Cham. https://doi.org/10.1007/978-3-319-52630-0_2
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