Title page for ETD etd-05222002-224626

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
  • legislation
  • genetic discrimination
  • public participation
Date of Defense 2002-05-06
Availability restricted

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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