Genetic Discrimination in the U.S.
A review of Genetic Discrimination: A Genealogy of an American Problem, by Janet Elizabeth Childerhose.
Many worlds are tethered together in the fine and even-handed dissertation produced by Janet Elizabeth Childerhose. While coming out of anthropology, the author demonstrates competence in applying the methodologic practices of her trade while maintaining a keen freedom of form when it comes to the incorporation of theoretical frameworks from disparate social science disciplines. Such agility to travel between academic worlds marks Childerhose’s work as conspicuously inclusive and thus relevant for those whose interests span the wide intellectual stretches of space between health policies, practices, politics, and productions.
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The problems surrounding genetic discrimination lie in the eye of the beholder and Childerhose’s genealogic frame illuminates the many faces of her object of study. As any dissertating doctoral student should, the author limits the aims of her illuminations to largely legalistic notions of discrimination choosing, for example, to examine how genetic workplace screening is appropriated by employers (p. 209). Opening up the terrain of health policy, broadly construed, Childerhose uses genealogic and biographic frames à la Michel Foucault and Igor Kopytoff to trace the shifting sands of public conception of what will eventually become genetic discrimination through thirty years of U.S. scientific and medical history. The generative components of this clearly ambitious work is found in, first, the claim that the state has used genomics as a nation-building tactic and, second, in the introduction of the new theoretical construct of genomic citizenship based on work by Rayna Rapp, Karen-Sue Taussig, and Deborah Heath (and informed by Anne Kerr) (pp. 52, 105, 351, 336). The form of citizenship delineated by Childerhose is one that involves the geneticization of all American citizens as havers of inherently flawed genes and thus constituent members of one big, imperfect family in need of a healthy dose of self-surveillance and legislative protection from genetic discrimination (p. 335).
Bookended by an instructive introduction and a solid conclusion, the two hundred pages in between make up parts one and two of the work. Part One paints the historical backdrop detailing genetic discrimination’s roots in workplace screening, health insurance policies, disability rights activism, and new concerns over patient privacy attendant to the rise of biotechnology. The author examines a number of important shifts including the construction of new category of American: the asymptomatic with a high-risk genetic makeup (p. 109). Informed by texts reaching across academic, public, and trade circles, Childerhose elucidates 1970s and 80s American life as marked by many milestones, including controversial public health screening interventions, new notions of discrimination, and health policy changes within both military and civilian social institutions. Childerhose writes that, in 1992, genetic discrimination gets publicly named and framed by way of a pivotal article in the American Journal of Human Genetics (p. 156). The remainder of Part One demonstrates how this article came to be and follows the shifting conceptions of genetic discrimination established by important players from many ideological and intellectual corners. The historical exploration is meticulously researched and demonstrates the author’s commitment to providing the fullest frame for this very complicated story.
Three years of ethnographic fieldwork are condensed into an engaging 161 pages provided in Part Two. Gathered from public policy hearings of the Secretary’s Advisory Committee on Genetics, Health, and Society, these dialogic demonstrations show the Department of Health and Human Service’s best and brightest struggling to translate the findings of the Human Genome Project into public health and clinical practices (p. 207). The discussions reveal deep fissures in the way Americans get access to health coverage which limits the promises made by advocates of personalized genomic medicine. The lack of scientific, let alone genetic literacy among the general public and health care providers undercut the vision of intimate provider-patient relationships fostering smarter care management which had gone such a long way to win financial support for the Human Genome Project. Through a careful study, Childerhose illustrates the kinds of concerns that occupy the hearts and minds of the so-called “genetics community;” a community largely absent of dissenting perspectives (p. 328). Without dissent, the committee’s notions went unchallenged and those who bear at least some responsibility for the dangers of genetic discrimination were positioned as the appropriate authorities to emancipate Americans from those same dangers. This intricately woven story makes use of multiple methodologic practices to explore thirty years of material in an effort to demonstrate how America embraced a kind of genomic citizenship model thus becoming the genomic nation it is today. With Childerhose as guide, this work provides an excellent demonstration of skill across methodologies and disciplinary lines and would be a particularly useful text for anyone interested in genomic medicine and health policy within the United States context.
Early in the introduction, Janet Childerhose aligns her perspective with that of Ian Hacking, saying: “[I] do not make claims about whether genetic discrimination is good or bad, or any judgments about the federal nondiscrimination legislation. I look instead at why genetic discrimination has acquired its stature as a significant problem in public discourse…” (p. 11). This disinterested view gives the dissertation its laudably even-handed character. The author’s choice to stay unimpassioned stems from her commitment to honoring the ethnographic hallmark of reflexivity. Childerhose delineates the countless ways in which using a person’s genes towards discriminatory ends, clearly demonstrated to be always already bad, but at the same time the roominess within her text makes it possible for the reader to insert themselves into the story. Overall, the dissertation provides great insight on the question of what we owe each other — or what we think we owe each other — which animates so much of the discussions of genetic discrimination.
Alina Bennett, MA
Institute for the Medical Humanities
University of Texas Medical Branch
McGill University. 2008. 463 pp. Primary Advisor: Margaret Lock.