Thesis: The Human Genome Project and ELSI: The Imperative of Technology and Reduction of the Public Ethics Debate
Carvalho, Tito Brige
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Portrayed as the Manhattan Project of the late 20th century, the Human Genome Project, or HGP, not only undertook the science of sequencing the human genome but also the ethics of it. For this thesis I ask how the HGP did this; what was the range of possibilities of goods and evils imagined by the HGP; and what, if anything, was left out. I show that the Ethical, Legal, and Social Implications, or ELSI, research program of the HGP was inscribed with the competencies of the professional field of bioethics, which had lent itself useful for governing biomedical science and technology earlier in the 20th century. Drawing on a sociological framework for understanding the development of professional bioethics, I describe the development of ELSI, and I note how the given-in-advance boundaries between authorized and unauthorized questions shaped not only its formation but also biased technologically based conceptualizations of social problems and potential solutions.