ELSI: Ethical, Legal and Social Issues surrounding availability of genomic information DOD and NIH devoted ~3-5% of annual HGP budgets to ELSI research ELSI Objectives: Anticipation of the implications for individuals and society of sequencing the human genome Stimulation of public discussion of the issues Development of policy options that would ensure beneficial use of HGP information

Societal concerns addressed by ELSI research: Privacy and Legislation Who owns and controls genetic information? Who has access to genetic information and how should it be used? Race and Genetics How does personal genetic information affect an individual and society's perceptions of that individual? How does genomic information affect members of minority communities?

Societal concerns addressed by ELSI research: Behavioral Genetics and Human Responsibility Do people's genes make them behave in a particular way? Can people always control their behavior? Where is the line between medical treatment and enhancement? Genetically Modified Organisms (GMOs) Are GM foods and other products safe to humans and the environment? How will these technologies affect developing nations' dependence on the West?

Genetic Testing and Gene Therapy How will genetic tests be evaluated and regulated for accuracy, reliability, and utility? (Currently, there is little regulation at the federal level.) Should testing be performed when no treatment is available? Should parents have the right to have their minor children tested for adult-onset diseases? Are genetic tests reliable and interpretable by the medical community? How do we prepare the public to make informed choices? How do we as a society balance current scientific limitations and social risk with long-term benefits? Societal concerns addressed by ELSI research:

More information on ELSI and the Human Genome… Department of Energy National Human Genome Research Institute (NHGRI), Policy and Ethics Your Genes, Your Choices: Exploring the issues raised by genetic research. Catherine Baker - published by Science + Literacy for Health, American Association for the Advancement of Science (AAAS). Free online at: or by calling (202) http://ehrweb.aaas.org/ehr/books/