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Moving from the one of the earliest examples of federal intervention in science and technology ethics to one of the most recent, the 2008 Genetic Information Nondiscrimination Act (GINA) provides an example of the ways in which ethics intersect with the work of knowledge creation. Rather than direct commission of scientists and engineers, GINA seeks to protect a source of scientific data: volunteers who contribute genetic information to research. Legislators, convinced by actors ranging from scientists to lobbyists, determined that understanding the human genetic code relied on collecting a broad base of genetic information for study. Projects such as the Personal Genome Project rely on thousands of volunteers to submit DNA samples (Callaway, 2008). GINA promises that disclosure of genetic information will not be used to hinder, damage, or otherwise demean these volunteers. In so doing, GINA attempts to guarantee equal treatment regardless of an individual’s inherited genetic code. GINA implies that ethics is a part of the process of science by highlighting the right to privacy of research subjects. In so doing, GINA draws on a long history of the protection of privacy, safety and dignity of research subjects (Office of the Secretary of The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979).

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Released: September 27, 2013
Genres: Short
Crew: Jeffrey A. Burke

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Recoding Innovation: GINA and the Advancement of Genomics Comments

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