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.

Categories: Genetics, Ethics