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Genetic PoliticsReview - Genetic Politics
From Eugenics to Genome
by Anne Kerr and Tom Shakespeare
New Clarion Press, 2002
Review by Larry D. Hultgren, Ph.D.
Jun 11th 2003 (Volume 7, Issue 24)

Genetic Politics: From Eugenics to Genome warns that eugenics is no relic of a totalitarian Nazi past but an "emergent property" of "the century of the gene." Although the discussion in the first part of the book moves descriptively "from eugenics to genome," in the remainder of the text, Anne Kerr and Tom Shakespeare argue that the histories of eugenics and genetics have so intertwined that current genetic research and clinical practice are not neutral but serve powerful eugenic ideals. Fearing the possibility of a final genetic solution to the plight of disabled people, their response to the 'medicalization of disability' is an alternate exploration of the construction of genetic disease in the social, economic, cultural and political contexts. Using the lens of politics, they conclude that 'the problem of disability' is less a medical problem than an issue of human rights.

The assumptions of the authors of Genetic Politics are quite explicit: "We do not believe that the world would be a better place without disabled people. Nor do we believe that disability is a tragedy best avoided" (6). Ann Kerr and Tom Shakespeare challenge those who argue that genetic impairment is undesirable, unnatural and, therefore, should be prevented. They believe that such a neo-eugenic conclusion is the result of "the current tendency to privilege technical expertise and commercial hype...instead of normative prescriptions about choice and progress" (186).

Their argument proceeds in two parts. Although their focus is primarily on the UK, our authors do weave key developments in the USA and other European countries into their discussion. They begin by laying out some of the conceptual history of the eugenics movement that, they believe, still informs the attitude of many physicians and other health care workers. They review the rise of eugenics in the UK and the USA, and then they discuss the implementation of eugenic ideals in totalitarian Nazi Germany and, later, in democratic societies such as Denmark, Norway, Sweden, and Finland. Part one ends with a discussion of the co-evolution of eugenics and genetics during the inter-and post-war periods.

A discussion of recent developments in genetics provides the background for part two that attempts to connect our eugenic legacy with current debates about the social implications of the so-called "new genetics." Selected examples of 'genohype' (not their term), "genetic essentialism," or "genetic determinism" in media and popular discourse, commercial companies and charities reveal that eugenic ideology still percolates throughout genetic research and clinical practice. As an example, we are shown how "the rights of well-resourced and able-bodied health consumers to genetic tests take precedence over the rights of disabled people to equality" (161)

Kerr and Shakespeare argue that the medicalization of genetic disease often ignores how value-laden and culturally specific are our notions of impairment. Rather than promising medical intervention, the standard medical model, they profess, conceptualizes the disabled as biologically inferior, as a "genetic underclass." Thus our authors help us to better understand why discussions about improving humanity through genetics, for example, elicit fears in the disabled people's movement over the possible re-emergence of a eugenic ideal that fosters a climate of intolerance against disabled people: "the narrative of improving health is mainly on the basis of removing disabled people from the world...."(105).

As we come to the close of the book's argument, we must certainly acknowledge that our authors have successfully uncovered problematic eugenic assumptions underpinning the possibility of 'making' instead of 'having' children. Shakespeare and Kerr have weakened the apparent strangle hold of genetic explanations of behavior and disease in our understanding of the disabled by providing an alternative perspective that reminds us of the social, economic, cultural, and political factors that help to define disability. As a result, they offer a corrected view of impairment as less a medical problem than a human rights issue.

In addition to "policy pragmatics" to reduce the potential for eugenics, the authors call for a rethinking of our "philosophies of life and choice" which will involve "promoting an alternative model of care, the social model of disability, as well as a more contextual understanding of choice, science and technology" (188). Since the over-arching goal is a world that values diversity and equality, we might expect one final plea for the inclusion of those who are physically and/or mentally compromised and impaired in our definition of "normal" for both clinical practice and public policy. However, our authors conclude their argument with the rather curious proposal that "[p]eople should be able to choose to have a disabled child, and resources must be provided to allow them to do so" (186) [italics added]. Thus, we do not get the expected rethinking of the meaning of "disabled" in the standard medical model that previously was severely criticized. Rather than the promised "alternative ethos for genetics and society" (7), neither disabled people nor their parents are cast in positive roles as responsible agents, whose lives have a value equal to anyone's. Since the claim is that society still has special charitable duties to the disabled, inequality still lingers in the status quo; discrimination persists; and people with disabilities remain "genetic outsiders." In other words, individuals with genetic disorders are still locked in their "diseased" role as recipients of benevolence rather than as persons with equal social and moral standing.

 

2003 Larry D. Hultgren

Larry Hultgren describes himself as follows:

A.B. Grinnell College majoring in Philosophy and Religion; Ph.D. Vanderbilt University in Philosophy. Currently Professor of Philosophy at Virginia Wesleyan College, Norfolk, VA. Since I am at a liberal arts college, my teaching runs the gamut of philosophy offerings. I am especially interested in interdisciplinary pursuits, and I direct the college's Social Ecology Program and our innovative PORTfolio Project, which attempts to bring the liberal arts to life for our students by connecting the classroom with real world experiences. I also serve on the Bioethics Committee of the Children's Hospital of the King's Daughters in Norfolk, VA, and serve on the Board of Directors of the Bioethics Network of Southeast Virginia.


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