Type of Document Master's Thesis Author DeWeese, Pamela URN etd-05222002-224626 Title The ELSI Research Program and Genetic Nondiscrimination Legislation: A Study in Science and Public Poilicy Degree Master of Science Department Science and Technology Studies Advisory Committee
Advisor Name Title Zallen, Doris T. Committee Chair Allen, Barbara L. Committee Member La Berge, Ann F. Committee Member Keywords
- genetic discrimination
- public participation
Date of Defense 2002-05-06 Availability restricted Abstract(ABSTRACT)
The Human Genome Project, a multi-national initiative to map and sequence the entire human genome, is expected to reach completion in the year 2003. One of the more immediate and direct results of this remarkable scientific effort is an increase in both the number and range of genetic tests available. Although there is enormous value in the knowledge gained from information that predicts present or future disease, there are also some risks. This thesis, based on the content analysis of genetic nondiscrimination legislation and evidence obtained from individuals involved in the policy formation process, reveals how the Ethical, Legal, and Social Implications (ELSI) Program of the U.S. Human Genome Project is dealing with the possibility that insurers and employers will misuse genetic information. The findings from both the content analysis and the lived experience survey demonstrate that the ELSI program has made a substantial impact on forming this legislation.
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