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Title: The lawful uses of knowledge from the Human Genome Project

Technical Report ·
DOI:https://doi.org/10.2172/10155015· OSTI ID:10155015

Part I of this study deals with the right to know or not to know personal genetic information, and examines available legal protections of the right of privacy and the adverse effect of the disclosure of genetic information both on employment and insurance interests and on self esteem and protection of personal integrity. The study examines the rationale for the legal protection of privacy as the protection of a public interest. It examines the very limited protections currently available for privacy interests, including genetic privacy interests, and concludes that there is a need for broader, more far-reaching legal protections. The second part of the study is based on the assumption that as major a project as the Human Genome Project, spending billions of dollars on science which is health related, will indeed be applied for preventive and therapeutic public health purposes, as it has been in the past. It also addresses the recurring fear that public health initiatives in the genetic area must evolve a new eugenic agenda, that we must not repeat the miserable discriminatory experiences of the past.

Research Organization:
Columbia Univ., New York, NY (United States)
Sponsoring Organization:
USDOE, Washington, DC (United States)
DOE Contract Number:
FG02-92ER61394
OSTI ID:
10155015
Report Number(s):
DOE/ER/61394-1; ON: DE94012800; TRN: 94:005765
Resource Relation:
Other Information: PBD: 15 Apr 1994
Country of Publication:
United States
Language:
English