{"id":{"repo_id":"vt","oai_identifier":"oai:vtechworks.lib.vt.edu:10919/42773"},"canonical_url":"https://search.dev.ndltd.org/etd/vt/oai:vtechworks.lib.vt.edu:10919/42773","repository":{"repo_id":"vt","name":"Virginia Tech","base_url":"https://vtechworks.lib.vt.edu/oai/request"},"display":{"title":"The ELSI Research Program and Genetic Nondiscrimination Legislation: A Study in Science and Public Poilicy","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.","abstract_html":"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.","abstract_has_math":false,"creators":["DeWeese, Pamela"],"institution":"Virginia Tech","degree_name":"Master of Science","degree_level":"masters","degree_discipline":"Science and Technology Studies","degree_department":"Science and Technology Studies","school":null,"contributors":[],"advisors":[],"committee_chairs":["Zallen, Doris T."],"committee_members":["La Berge, Ann F.","Allen, Barbara L."],"year":2002,"date_issued":"2002-05-06","date_published":"2002-05-06","updated_at":"2026-07-22T22:20:20Z","subjects":["legislation","genetic discrimination","public participation"],"languages":[],"rights":["In Copyright"],"rights_urls":["http://rightsstatements.org/vocab/InC/1.0/"],"identifier_entries":[{"key":"dc:identifier.other","label":"Dc Identifier Other","values":["etd-05222002-224626"],"render_values":[{"text":"etd-05222002-224626","href":null,"code":true}]}]},"links":{"outbound_url":"http://hdl.handle.net/10919/42773","outbound_label":"Handle","outbound_source":"dc:identifier.uri"},"metadata_groups":[{"id":"people","label":"People","entries":[{"key":"dc:contributor.committeechair","label":"Committee Chair","values":["Zallen, Doris T."]},{"key":"dc:contributor.committeemember","label":"Committee Member","values":["La Berge, Ann F.","Allen, Barbara L."]},{"key":"dc:contributor.department","label":"Department","values":["Science and Technology Studies"]},{"key":"dc:creator","label":"Author","values":["DeWeese, Pamela"]}]},{"id":"academic_context","label":"Academic Context","entries":[{"key":"dc:date.accessioned","label":"Dc Date Accessioned","values":["2014-03-14T21:36:33Z"]},{"key":"dc:date.available","label":"Dc Date Available","values":["2014-03-14T21:36:33Z","2003-07-26"]},{"key":"dc:date.issued","label":"Date","values":["2002-05-06"]},{"key":"dc:publisher","label":"Institution","values":["Virginia Tech"]},{"key":"dc:type","label":"Dc Type","values":["Thesis"]},{"key":"thesis:degree_discipline","label":"Discipline","values":["Science and Technology Studies"]},{"key":"thesis:degree_level","label":"Degree Level","values":["masters"]},{"key":"thesis:degree_name","label":"Degree Name","values":["Master of Science"]},{"key":"thesis:institution_name","label":"Thesis Institution Name","values":["Virginia Polytechnic Institute and State University"]}]},{"id":"subjects_keywords","label":"Subjects and Keywords","entries":[{"key":"dc:subject","label":"Dc Subject","values":["legislation","genetic discrimination","public participation"]}]},{"id":"language_rights","label":"Language and Rights","entries":[{"key":"dc:rights","label":"Dc Rights","values":["In Copyright"]},{"key":"dc:rights.uri","label":"Rights URI","values":["http://rightsstatements.org/vocab/InC/1.0/"]}]},{"id":"identifiers","label":"Identifiers","entries":[{"key":"dc:identifier.other","label":"Dc Identifier Other","values":["etd-05222002-224626"]},{"key":"dc:identifier.uri","label":"Identifier URI","values":["http://hdl.handle.net/10919/42773"]}]},{"id":"additional","label":"Additional Metadata","entries":[{"key":"dc:description.abstract","label":"Abstract","values":["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."]},{"key":"dc:description.degree","label":"Dc Description Degree","values":["Master of Science"]},{"key":"dc:title","label":"Title","values":["The ELSI Research Program and Genetic Nondiscrimination Legislation: A Study in Science and Public Poilicy"]}]}],"canonical_facts":{"dc:contributor.committeechair":["Zallen, Doris T."],"dc:contributor.committeemember":["La Berge, Ann F.","Allen, Barbara L."],"dc:contributor.department":["Science and Technology Studies"],"dc:creator":["DeWeese, Pamela"],"dc:date.accessioned":["2014-03-14T21:36:33Z"],"dc:date.available":["2014-03-14T21:36:33Z","2003-07-26"],"dc:date.issued":["2002-05-06"],"dc:description.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. 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