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Note: For ELSI research information, see our ELSI Research page.

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. This represents the world's largest bioethics program, which has become a model for ELSI programs around the world.

Societal Concerns Arising from the New Genetics

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?

For more on this topic, see the Privacy and Legislation page in this ELSI suite.

Privacy and confidentiality of genetic information.

Who owns and controls genetic information?

For more on this topic, see the Privacy and Legislation page in this ELSI suite.

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?        

For more on this topic, see the Minorities, Race, and Genetics and Genetic Anthropology, Ancestry, and Ancient Human Migration pages in this ELSI suite.

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?

For more on this topic, see the Gene Testing page in this ELSI suite.

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?

For more on this topic, see the Gene Testing and Gene Therapy pages in this ELSI suite.

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?

For more on this topic, see the Gene Testing and Gene Therapy pages in this ELSI suite.

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?

For more on this topic, see the Behavioral Genetics page in this ELSI suite.

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?

For more on this topic, see the Genetically Modified Foods page in this ELSI suite.

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?

For more on this topic, see the Patenting page in this ELSI suite.

Webpages in this ELSI Suite

As mentioned above, the U.S. DOE and NIH have devoted a percentage of their annual HGP budgets toward studying the ELSI issues surrounding the availability of genetic information. This suite of ELSI pages covers a number of these issues.

Keep in mind as you browse these pages that not all of these topics are directly related to the HGP. For example, forensics definitely raises some ethical concerns, but it is not directly related to the HGP --nor are gene testing, gene therapy, cloning, and behavioral genetics.

Privacy and Legislation
Minorities, Race, and Genetics
Genetic Anthropology, Ancestry, and Ancient Human Migration
Patenting
Behavioral Genetics
Forensics
Gene Testing
Gene Therapy
Genetics in the Courtroom
GM Foods, Crops, and Organisms
Minorities and Genomics
Cloning

Genetic Privacy and Discrimination

• Protecting Genetic Privacy:  Why It is So Hard to Do
• Legislation Sought Against Gene Bias
• Fear of Genetic Discrimination Drives Legislative Interest

Gene Testing

• Blueprint for Life
• Genes, Dreams, and Reality: The Promises and Risks of the New Genetics
• Bridging the Gap Between Life Insurer and Consumer in the Genetic Testing Era
• What Can the New Gene Tests Tell Us?

Gene Therapy

• Human Gene Therapy:  Present and Future
• Ethical Issues in Human Gene Therapy
• The Human Genome Project and the Courts: Gene Therapy and Beyond

Genetics in the Courtroom

• The Human Genome Project: What a Legal Assistant Needs to Know
• From Crime Scene to Courtroom: Integrating DNA Technology into the Criminal Justice System
• Complex Scientific Evidence and the Jury
• Educating Judges for Adjudication of New Life Technologies
• Hope, Fear, and Genetics: Judicial Responses to Biotechnology
• Keeping the Gate:  The Evolving Role of the Judiciary in Admitting Scientific Evidence

• Genes and Behavior: A Complex Relationship
• The Impact of Behavioral Genetics on the Law and the Courts

• HumGen - a website about the social, ethical and legal aspects of human genetics.
• Center for Genome Ethics, Law, and Policy at Duke University
• Genetics and Public Policy Center at Johns Hopkins University
• ELSI Research page (more technical information on the U.S. HGP ELSI program, including goals, grants and funding, and ongoing research.
• The DNA Files is a series of public radio documentaries about genetic research, its applications, and its impact on our lives. Details available at this web site.
• Your Genes, Your Choices: A booklet describing the Human Genome Project, the science behind it, and the ethical, legal, and social issues that are raised by the project. Includes "what if" scenarios good for starting discussions
• Challenges of Genome Research for Minority Communities Conference Proceedings (July 2000)
• ELSI articles from Human Genome News
• ELSI Bibliography (publications prior to 1995)
• Links to other ELSI Websites