Biomedical Research Issues in Genetics

In addition to analyzing the direct ethical, legal and social implications of the Human Genome Project (HGP), the National Human Genome Research Institute (NHGRI) funds examinations of issues that are related because they involve manipulation of human genetic material or information. These include such controversial topics as genetic engineering and enhancement, and eugenics. Other controversial but related issues - such as stem cell research and cloning - have not yet been examined by NHGRI.

What are the ethical and legal implications of using our advancing knowledge of genetics to, in effect, enhance human beings by replacing or repairing a gene or genes associated with increased risk of disease" Is enhancement ethical for certain sub-populations, such as the aging, but not for others" Can eugenics " the so-called science of selectively breeding superior human beings with "better" genes " ever be used ethically, or is the very concept inherently discriminatory" Will cloning be used to "improve" the genetic makeup of individuals or are the ethical considerations too divisive" What does stem cell research portend for the future of regenerative medicine"

NHGRI supports highly technical genetic research that is rapidly advancing our understanding of the human genome. This new information, although potentially beneficial to the health of Americans, can also be misused. NHGRI created the Ethical, Legal and Social Implications (ELSI) Research Program in 1990 as an integral part of the HGP.

The insights gained through ELSI research inform the development of federal guidelines, regulations and legislation to safeguard against misuse of genetic information. Through the ELSI Research Program, NHGRI also supports a variety of ethics- and policy-related research studies, workshops and conferences to further explore and address such issues. Between 1990 and 2001, these ELSI-funded activities included some 235 research and education projects, more than 550 peer-reviewed journal articles, books, newsletters, Web sites and television and radio programs, as well as dozens of workshops, conferences and related activities focused on translating ELSI research into clinical and public health practices.

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Current Topics Resources

Genetic Engineering and Enhancement
  • Ethical, Legal and Social Implications Program Funded Projects and Publications
    For full citations, see Publications and Products.
    For further description of the author's project, search The ELSI Research Program Abstracts and Activities Database.

    • Juengst, Eric T. "Anticipating enhancement: ethical, legal and social issues."
    • Juengst, Eric T. "Managing enhancement: ethical and public policy issues."
    • Juengst, Eric T. "Enhancement ethics and the molecular genetics of aging."
    • Rothman, David J. "The genome project and technologies of enhancement."
    • Sikela, James M. "Ethical implications of genetic enhancement technologies."

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Cloning

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Stem Cell Research

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Eugenics

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Last Reviewed: March 7, 2012