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The U.S. Department of Energy (DOE) and the National Institutes of Health (NIH) have 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.

The ELSI programs at DOE and NIH have issued a call for abstracts for "A Decade of ELSI Research," a meeting to be held in January 2001. See brochure for details.

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?

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?

        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.

        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?

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

Safety and environmental issues concerning genetically altered foods and microbes.

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?

        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, and behavioral genetics.

Privacy and Legislation
Patenting
Behavioral Genetics
Forensics
Gene Testing
Gene Therapy
Genetics in the Courtroom

Genetic Privacy and Discrimination

• Protecting Genetic Privacy:  Why It is So Hard to Do 1999
• Legislation Sought Against Gene Bias 1998
• Fear of Genetic Discrimination Drives Legislative Interest 1997

Gene Testing

• Genes, Dreams, and Reality: The Promises and Risks of the New Genetics 1999
• Bridging the Gap Between Life Insurer and Consumer in the Genetic Testing Era 1999
• What Can the New Gene Tests Tell Us? 1997

Gene Therapy

• Human Gene Therapy:  Present and Future 1999
• Ethical Issues in Human Gene Therapy 1999
• The Human Genome Project and the Courts: Gene Therapy and Beyond 1999

Genetics in the Courtroom

• From Crime Scene to Courtroom: Integrating DNA Technology into the Criminal Justice System 1999
• Complex Scientific Evidence and the Jury 1999
• Educating Judges for Adjudication of New Life Technologies 1999
• Hope, Fear, and Genetics: Judicial Responses to Biotechnology 1999
• Keeping the Gate:  The Evolving Role of the Judiciary in Admitting Scientific Evidence 1999

• Genes and Behavior: A Complex Relationship 1999
• The Impact of Behavioral Genetics on the Law and the Courts 1999

• ELSI Research page (more technical information on HGP ELSI goals, ELSI grants and funding, ongoing ELSI research, and the U.S. DOE HGP ELSI program)
• 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
• The Gene Letter: A newsletter on ethical, legal, and social issues in genetics for interested professionals and consumers
• ELSI articles from Human Genome News
• ELSI Bibliography (publications prior to 1995)
• Links to other ELSI Websites