The U.S. Department of Energy (DOE) and the National Institutes of Health (NIH) devoted 3% to 5% of their annual Human Genome Project (HGP) budgets toward studying the ethical, legal, and social issues (ELSI) surrounding availability of genetic information. At the time, this represented the world's largest bioethics program, and it become a model for ELSI programs around the world. To learn more about the ELSI research funded by DOE HGP, see the ELSI Research page. Also, NIH NHGRI continues to fund ELSI research.
Fairness in the use of genetic information by insurers, employers, courts, schools, adoption agencies, and the military, among others.
Who should have access to personal genetic information, and how will it be used?
Privacy and confidentiality of genetic information.
Who owns and controls genetic information?
Psychological impact and stigmatization due to an individual's genetic differences.
How does personal genetic information affect an individual and society's perceptions of that individual?
How does genomic information affect members of minority communities?
Reproductive issues including adequate informed consent for complex and potentially controversial procedures, use of genetic information in reproductive decision making, and reproductive rights.
Do healthcare personnel properly counsel parents about the risks and limitations of genetic technology?
How reliable and useful is fetal genetic testing?
What are the larger societal issues raised by new reproductive technologies?
Clinical issues including the education of doctors and other health service providers, patients, and the general public in genetic capabilities, scientific limitations, and social risks; and implementation of standards and quality-control measures in testing procedures.
How will genetic tests be evaluated and regulated for accuracy, reliability, and utility? (Currently, there is little regulation at the federal level.)
How do we prepare healthcare professionals for the new genetics?
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?
Uncertainties associated with gene tests for susceptibilities and complex conditions (e.g., heart disease) linked to multiple genes and gene-environment interactions.
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?
Conceptual and philosophical implications regarding human responsibility, free will vs genetic determinism, and concepts of health and disease.
Do people's genes make them behave in a particular way?
Can people always control their behavior?
What is considered acceptable diversity?
Where is the line between medical treatment and enhancement?
Health and environmental issues concerning genetically modified foods (GM) and microbes.
Are GM foods and other products safe to humans and the environment?
How will these technologies affect developing nations' dependence on the West?
Commercialization of products including property rights (patents, copyrights, and trade secrets) and accessibility of data and materials.
Who owns genes and other pieces of DNA?
Will patenting DNA sequences limit their accessibility and development into useful products?
The Human Genome Project (HGP) was an international 13-year effort, 1990 to 2003. Primary goals were to discover the complete set of human genes and make them accessible for further biological study, and determine the complete sequence of DNA bases in the human genome. See Timeline for more HGP history.
Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.