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Ethical, Legal, & Social Implications of Genomic Research

Program Description

Portraits of five middle-aged people

While the Environmental Genome Project promises to improve our understanding of gene-environment interactions and their effects on human health, the research may also generate a number of complex ethical, legal, and social implications. Some of these concerns relate to the protection of human subjects, the privacy of genetic information, and the possibility of discriminatory uses of the data generated by the project. The ELSI program focuses on developing policies to effectively deal with these ethical, social, and legal issues.

The NIEHS has previously developed several ELSI funding opportunities that have examined ethical, legal, and social implications relevant to the Environmental Genome Project and have supported research and education activities that improve public and professional understanding about genetics, genome technology, and the ethical, legal and social implications of this information and technology. “The Partnerships to Address Ethical Challenges in Environmental Health” was developed in partnership with the National Human Genome Research Institute (NHGRI) as an extension of the Environmental Justice and the Environmental Genome programs. The goal of this program was to develop educational projects addressing social, ethical, and legal concerns of the public in research endeavors related to gene-environment interactions, environmental health hazards, and disease susceptibility. These projects helped to assess the community's level of knowledge, and develop, implement, and evaluate educational materials in two main areas: gene-environment interaction studies and other non-therapeutic research in environmental health. Many of these grants focused on detailed assessments of the perspectives and understanding of social, legal, and ethical issues in environmental health research among community members, researchers, health care providers, and attorneys. Educational curriculum was developed for the public to better understand the risks of environmentally related disease. Many grants also involved ongoing dialogue between scientists and the public for accurate translations of the scientific findings of environmentally-influenced research, as well as assessment of educational interventions used. Specific examples of issues explored include: assessing community understanding of asbestos-related disease, assessing awareness and knowledge concerning environmental genetics among communities in polluted areas or deteriorated waste sites, and ethical issues regarding research on home-based interventions on asthma and lead.

“The Ethical, Legal, and Social Implications of Human Genetics and Genomic Research Education Grant Program” was a flexible program aimed at developing innovative educational approaches that helped increase knowledge and understanding of genetics and genomics research and its ethical, legal, and social implications. A wide variety of educational tools and new curriculum materials were developed to educate scientists, health care professionals, and the lay community.

“Ethical, Legal, and Social Implications of Human Genetics and Genomic Regular Research Grant Program” was designed to solicit research projects that anticipate, analyze, and address the ethical, legal, and social implications of the discovery of new genetic technologies and the availability and use of genetic information resulting from human genetics and genomic research. Of particular interest were studies that: 1) examined the issues surrounding the completion of the human DNA sequence and the study of human genetic variation; 2) examine the issues raised by the integration of genetic technologies and information into health care and public health activities; 3) examined the issues raised by the integration of knowledge about genomics and gene-environment interactions into non-clinical settings; 4) explored the ways in which new genetic knowledge may interact with a variety of philosophical, theological, and ethical perspectives; and 5) explored how socioeconomic factors, gender, and concepts of race, ethnicity and culture influence the use and interpretation of genetic information, the utilization of genetic services, and the development of policy.

Program Contact
Kimberly McAllister Department of Health & Human Services National Institutes of Health
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Last Reviewed: November 28, 2007