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Choosing Who Will Be Disabled: Genetic Intervention and the Morality of Inclusion

Published online by Cambridge University Press:  04 August 2010

Ellen Frankel Paul
Affiliation:
Bowling Green State University, Ohio
Fred D. Miller, Jr
Affiliation:
Bowling Green State University, Ohio
Jeffrey Paul
Affiliation:
Bowling Green State University, Ohio
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Summary

HOPES AND FEARS OF THE NEW GENETICS

The Nobel prize-winning molecular biologist Walter Gilbert described the mapping and sequencing of the human genome as “the grail of molecular biology.” The implication, endorsed by enthusiasts for the new genetics, is that possessing a comprehensive knowledge of human genetics, like possessing the Holy Grail, will give us miraculous powers to heal the sick, and to reduce human suffering and disabilities. Indeed, the rhetoric invoked to garner public support for the Human Genome Project appears to appeal to the best of the Western tradition's enthusiasm for progress: the idea of improving human lives through the practical application of scientific knowledge.

What is more, the rhetoric of the proponents of the new genetics is explicitly—almost self-consciously—universalistic: genetic science is to serve human beings generally, rather than any particular people or nationality or “race.” In fact, the very understanding which the new science seeks and the manner in which it is sought seem to highlight the importance of what all human beings have in common rather than what differentiates us. And the human genome that is the object of an international network of sequencing and mapping projects is itself a constructed composite, not the genome of any particular person or even a composite representative of any particular group.

Those who advocate social and private investment in the new genetics and support untrammeled scientific freedom to explore the human genome are aware that the “old eugenics”—the social policies of forced sterilization in the United States in the 1920s, 1930s, and beyond, and of the killing of “defective types” in Nazi Germany—casts a long shadow over their endeavors.

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Publisher: Cambridge University Press
Print publication year: 1996

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