Human genome research and the public interest: Progress notes from an American Science Policy Experiment
- National Center for Human Genome Research, Bethesda, MD (United States)
This essay reviews the efforts of the US Human Genome Project to anticipate and address the ethical, legal, and social implications of new advances in human genetics. Since 1990, approximately $10 million has been awarded by the National Institutes of Health and the DOE, in support of 65 research, education, and public discussion projects. These projects address four major areas of need: (1) the need for both client-centered assessments of new genetic services and for improved knowledge of the psychosocial and ethnocultural factors that shape clients' clinical genetic experiences; (2) the need for clear professional policies regarding human-subject research, clinical practical standards, and public health goals in human genetics; (3) the need for social policy protection against unfair access to and use of personal genetic information; (4) the need for improved public and professional understanding and discussion of these issues. The Human Genome Project's goal is to have defined, by 1995, policy options and programs capable of addressing these needs. 47 refs.
- OSTI ID:
- 5032073
- Journal Information:
- American Journal of Human Genetics; (United States), Vol. 54:1; ISSN 0002-9297
- Country of Publication:
- United States
- Language:
- English
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