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Social, Cultural and Religious Issues in Genetic Research
Some of the most difficult questions arising from human genome research are not those related to scientific, biomedical or legal issues. Rather, they are the questions raised by the social, cultural or religious implications of our newfound genetic knowledge and technology. Insights into our evolutionary history and the small variations within individual humans' genomes may affect concepts of race, ethnicity and even gender. Studies of how genes affect behavior take researchers into the arena of social science and psychology. And, in the light of genetic discoveries, new dimensions of religious or philosophical concepts about identity, responsibility and what it means to be human may become apparent.
The National Human Genome Research Institute (NHGRI) supports highly technical genetic research that is rapidly advancing our understanding of the human genome. This new information, although potentially beneficial to the health of Americans, can also be misused. NHGRI created the Ethical, Legal and Social Implications (ELSI) program in 1990 as an integral part of the Human Genome Project.
The insights gained through ELSI research inform the development of federal guidelines, regulations and legislation to safeguard against misuse of genetic information. Through the ELSI program, NHGRI also supports a variety of ethics- and policy-related research studies, workshops and conferences to further explore and address such issues. Between 1990 and 2001, these ELSI-funded activities included some 235 research and education projects, more than 550 peer-reviewed journal articles, books, newsletters, Web sites and television and radio programs, as well as dozens of workshops, conferences and related activities focused on translating ELSI research into clinical and public health practices.
Current Topics Resources
Genetics, Race and Ethnicity
The use of genetic information related to racial, ethnic and other minorities.
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NHGRI-Sponsored Activities
"Ethical, Legal and Social Implications of Genetic Variation Research" consortium.
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Ethical, Legal and Social Implications Program Funded Projects and Publications
For full citations, see: Publications and Products.
For further description of the author's project, search The ELSI Research Program Abstracts and Activities Database.
- Citrin, Toby. "Engaging minority communities in genetics policy making."
- Duster, Troy. "Pathways to genetic screening: patient knowledge, patient practices."
- Elliot, Bruce C. Jr. "Ethnicity, citizenship, family: identity after the HGP."
- Foster, Morris W. "ELSI research in two Native American communities."
- Hunt, Linda M. "Concepts of race & ethnicity in genetics research."
- Jayaratne, Toby. "Beliefs among Whites and African Americans about genetic causes for gender, class and race differences: social/political educational implications."
- Kelly, Susan E. "Routes of access to genetic services for rural KY women."
- Lee, Sandra S. "The ethics of identifying race in the new genetics."
- Marshall, Patricia A. "Informed consent & concepts of race in genetic research."
- Miles, Steven. "African American genealogy, old records/new genetics."
- Romero, Francine. "American Indian and Alaska Native genetics research policy formulation meeting."
- Rothstein, Mark A. "Pharmacogenomics and minority populations."
- Sankar, Pamela L. "Beyond stigma: interpreting genetic difference."
- Smith, Edward J. T"uskegee genome conference."
- Spicer, Paul G. "The promises and pitfalls of native genetic research."
- Trottier, Ralph. "Impact of HGP derived technology on genetic testing, screening and counseling: cultural, ethical, and legal issues."
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Genetics, Gender and the Family
How genetic information can affect women and families.
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Ethical, Legal and Social Implications Program Funded Projects and Publications
For full citations, see: Publications and Products.
For further description of the author's project, search The ELSI Research Program Abstracts and Activities Database.
- Arar, Nedal. "Cultural and ethical issues in genetic family studies."
- Heath, Deborah. "Mapping genetic knowledge: an anthropological study."
- Holmes, Helen B. "Impact of the HGI on society: a women's studies approach."
- Mahowald, Mary. "The human genome project and women."
- Skinner, Debra G. "Culture and family interpretation of genetic disorders."
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Genetics, Behavior and Mental Illness
The role of genetic information in assessing how genes influence behavior and mental illnesses.
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Ethical, Legal and Social Implications Program Funded Projects and Publications
For full citations, see: Publications and Products.
For further description of the author's project, search The ELSI Research Program Abstracts and Activities Database.
- Conrad, Peter. "Genetics and behavior in the news media 1945-1995."
- Parens, Erik. "Tools for public conversation about behavioral genetics."
- Phelan, Jo C. "Genes, disease and stigma: a study of public attitudes and beliefs."
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Genetics and the Media
Public perceptions of genetic technology and genetic information
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Ethical, Social and Legal Implications Program Funded Projects and Publications
For full citations, see: Publications and Products .
For further description of the author's project, search The ELSI Research Program Abstracts and Activities Database.
- Aronowitz, Robert. "History of breast cancer risk, 1900-present."
- Condit, Celeste M. "An empirical study of change in public genetic discourse."
- Geller, Gail. "Publicizing genetic discoveries: the impact of the media."
- Markel, Howard. "The stigma of disease: implications of genetic testing."
- Nelkin, Dorothy. "Human heredity in American popular culture."
- Schneider, William. "Research and application of genetics blood group: 1900-1950."
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Philosophical and Religious Perspectives
The philosophical and religious issues raised by human genome research.
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Ethical, Legal and Social Implications Program Funded Projects and Programs
For full citations, see: Publications and Products. For further description of the author's project, search The ELSI Research Program Abstracts and Activities Database.
- Buchanan, Allen E. "Human genome initiative and limits of ethical theory."
- Caskey, C. Thomas. "National study conference on genetics, religion, and ethics."
- Callahan, Daniel J. "Genetic prism: understanding health and responsibility."
- Gert, Bernard. "Ethical issues arising from the human genome project."
- Hilgartner, Stephen. "Agenda setting in the human genome initiative."
- Hilgartner, Stephen. "Organizing the HGI: social impact and technology design."
- Kay, Lily E. "Information and the transformation of molecular biology."
- Mehlman, Maxwell J. "Access to the genome: justice at the frontier of science."
- Sagoff, Mark. "Concepts of nature, biotechnology, and the human genome."
- Sarkar, Sahotra. "Genetic reductionism: its sources and implications."
- Peters, Theodore F. "Theological questions raised by the human genome initiative."
- Wikler, Daniel I. "Human genome research in an interdependent world."
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Last Reviewed: January 6, 2009
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