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Human Genome News Archive Edition

Human Genome News, January 1991; 2(5)

NCHGR ELSI Program Plans Productive Year

The Human Genome Project is faced not only with formidable scientific challenges but also with important ethical, legal, and social questions arising from the availability of new genetic information. Questions related to genetic testing, counseling, access to genetic information, and insurability have led to the funding of projects designed to study these issues.

In FY 1990 the National Center for Human Genome Research (NCHGR) allocated $1.6 million to such projects initiated by the Center's Ethical, Legal, and Social Implications (ELSI) program, headed by Eric Juengst.

Studies, conferences, and research projects funded by NCHGR include the following activities:

• Two-year study, conducted by the Institute of Medicine, to examine questions of quality control in genetic test administration and interpretation.
• March 1991 conference at the University of Houston Health Law Center to summarize studies in antidiscrimination law, privacy rights, and property rights law and to assess the application of these laws.
• Three interdisciplinary meetings focusing on scientific, ethical, and legal problems and cosponsored with the American Association for the Advancement of Science.
• International conference at the University of Wisconsin, Madison, to examine such questions as military use of genetic information, international sharing of research benefits and burdens, and the definition of issues most in need of the international community's attention.
• Conference at the University of California, Berkeley, to encourage historians, social scientists, and philosophers to consider the social impact of new genetic information.
• January 1991 workshop in Washington, D.C., to establish areas of agreement and disagreement regarding responsible use of genetic information and to seek ways of reaching consensus in areas of greatest disagreement.
• April 1991 meeting at the Center for Biomedical Ethics, University of Minnesota, to examine and review professional standards in genetic counseling and to explore the impact that genomic research may have on the counseling profession.
• Research project focusing on physicians' attitudes and preparedness for widespread genetic testing.
• Research project designed to minimize misinterpretation of genetic test results and to clarify the genetic disease concept and analyze its role in ethical and social issues.
• Production of a public television series, in cooperation with the National Science Foundation, to inform the public about the role of genetic research in future health care.

The NCHGR ELSI program is also working with the DOE Human Genome Program and other organizations to disseminate information about the implications of genetic research.

ELSI Contact:

• Eric Juengst, Director
  NCHGR Ethical, Legal, and Social Implications Program
  Building 38A, Rm. 614
  9000 Rockville Pike
  Bethesda, MD 20892
  301/496-7531

HGMIS Staff

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