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Ethical, Legal, and Social Issues

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?

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?

 

ELSI Articles

In 2004, DOE sponsored a Nature Genetics supplement Genetics for the Human Race. This supplement originated from a May 2003 workshop held by the National Human Genome Center at Howard University in Washington DC. The workshop, Human Genome Variation and 'Race', and this special issue of Nature Genetics were proposed by scientists at Howard University and financially supported by the Genome Programs of the US Department of Energy, through its Office of Science; the Irving Harris Foundation; the National Institutes of Health, through the National Human Genome Research Institute; and Howard University. The supplement contains articles based on the presentations at this workshop.

In 2002, DOE sponsored the production of a 24-page genomics insert in the Journal for Minority Medical Students. Distributed in all issues of its spring issue, the supplement covers basic genetics, Zeta Phi Beta's genetics education program, the genetics of sickle cell anemia, medical genetics, and ELSI issues.

Another ELSI project was with the National Educational Foundation of Zeta Phi Beta Sorority, Inc. The sorority planned and conducted major informational conferences on the Human Genome Project and its impact on minority communities. The conferences covered a variety of topics—from basic genetics and HGP history to gene testing and careers in genetics. Held in Chicago in 2003, Atlanta and Washington, D.C. in 2001, Pennsylvania Legislative Black Caucus in 2001, Philadelphia in 2000, and New Orleans in 1999, the conferences have sparked numerous follow-up meetings and training sessions led by members of the educational foundation. [Proceedings from the 2000 conference are available online.]

In 1996, DOE HGP partnered with Tuskegee University to present the 3-day conference, “Plain Talk About the Human Genome Project.” The conference brought together internationally recognized scientists, bioethicists, and legal scholars from government, industry, and academia to discuss the ELSI of the use and misuse of genetic information. In rare "both-sides-of-the-argument" discussions, speakers expressed apprehension about the project and the use of its resulting genetic information. Concerns ranged from the fear of actuarial classifications of "genetic exceptionalism" to the burden African Americans would face if they were among those labeled by some as a biological underclass. Focused particularly on how the data might affect African Americans, the meeting also was a vehicle for students from Tuskegee and other historically black institutions to meet with genome scientists, hear the issues, and explore career possibilities in genomics. Proceedings from this conference are available as a book, Plain Talk About the Human Genome Project, 292 pp., 1997. [Contact Tuskegee University]

About 150 leaders of minority communities came together in June 1997 at the University of Maryland, Baltimore (UMB) to learn about the Human Genome Project. The DOE HGP-sponsored meeting's goals were to (1) inform minority communities about the Human Genome Project by explaining its potential benefits and clarifying its possible ELSI implications; and (2) make the aspirations and interests of these communities known to genome project scientists and policymakers. This program grew from organizers' concerns about an information vacuum among minorities regarding the genome project and the possibility that suspicions would arise about the project's intent. Proceedings from this conference were combined with an additional essay to form the book, The Human Genome Project and Minority Communities: Ethical, Social, and Political Dilemmas, edited by Raymond Zilinskas (Monterey Institute of International Studies) and Peter Balint (University of Maryland). It addresses the divisions between minority groups and the scientific community, particularly in the area of medical and genetic research. 144 pp., 2000.



Human Genome News Articles

Genetic Privacy and Discrimination

Gene Testing

Gene Therapy

Genetics in the Courtroom

  • The Human Genome Project: What a Legal Assistant Needs to Know
  • Special Issue of Judicature Genes and Justice
    The Growing Impact of the New Genetics on the Courts
    . November-December 1999  Vol 83(3)
    • 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
Behavioral Genetics
  • Special Issue of Judicature Genes and Justice
    The Growing Impact of the New Genetics on the Courts
    . November-December 1999  Vol 83(3)
    • Genes and Behavior: A Complex Relationship
    • The Impact of Behavioral Genetics on the Law and the Courts
General

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