The ELSI Research Program and Genetic Nondiscrimination Legislation: A Study in Science and Public Poilicy

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.

Name thesis:degree_name

Master of Science

Level thesis:degree_level

masters

Discipline thesis:degree_discipline

Science and Technology Studies

Department dc:contributor.department

Science and Technology Studies

Grantor dc:publisher

Virginia Tech

Year dc:date.issued

2002

Author dc:creator

• DeWeese, Pamela

Chair dc:contributor.committeechair

• Zallen, Doris T.

Committee members dc:contributor.committeemember

• La Berge, Ann F.
• Allen, Barbara L.

• legislation
• genetic discrimination
• public participation

Statement dc:rights

• In Copyright

Licence dc:rights.uri

• http://rightsstatements.org/vocab/InC/1.0/

Dc Identifier Other

etd-05222002-224626

OAI identifier oai:identifier

oai:vtechworks.lib.vt.edu:10919/42773