Genome Ethical, Legal, and Social Issues Section 

DOE Human Genome Program Contractor-Grantee Workshop VII 
January 12-16, 1999  Oakland, CA
    188. Individualizing Medicine Through Genomics: Medical and Social Implications 
     
    Henry T. Greely, Barbara A. Koenig, and Laura L. McConnell 
    Stanford Center for Biomedical Ethics, Stanford Law School, Stanford, CA 94305-8610 
    hgreely@stanford.edu 
     
    This grant partially supported a process that led to a conference at Stanford on October 17, 1998 on the implications of the increasing use of genetic variation in medicine. Scientists, physicians, and industry increasingly are recognizing the potential medical importance of such variation. The genetic variation involved can be that of a pathogen, a tumor, or healthy human tissue; the medical implications may be in prevention, treatment, or prognosis. In all these respects, the potential for applying individualized genomic information to medicine is an extension of existing knowledge based on the growing availability of inexpensive and convenient determination of what DNA sequence in known genes. Among the specific topics examined were 
     
    • Ethical issues in the research necessary for greater medical use of genetic variation, such as research correlating vast amounts of phenotypic data to vast amounts of genotypic data
    • The consequences of individual genomic variation for public health initiatives.
    • The possible uses of individualized genetic information by managed care to make treatment decisions.
    • The effects of greatly expanded use of individual genetic data in medicine on privacy.
    • The implications of studies of medically relevant genetic variation for public and medical views of "race."
    • Problems raised by the commercialization of treatments involving genetic variation, including intellectual property and FDA issues. 
    The conference, which was videotaped, included presentations from, among others, Drs. Anthony Carrano, Francis Collins, Paul Berg, Barbara Koenig, Laurie Zoloff-Dorfman, and Robert Cook-Deegan and Law Professors Rebecca Eisenberg, Alta Charo, and Henry Greely. At least one publication, a summary article, will be forthcoming from the conference; a broader set of articles may also result. 
 
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