Sun Valley Forum Shines the Light on Advances in Molecular Medicine

Support for a conference on the therapeutic implications of advances in genetic and molecular medicine

The Sun Valley Forum on National Health held a conference on August 3–7, 1997, in Sun Valley, Idaho, to review and discuss the implications of advances in molecular medicine for the improvement of health and health care.

Results

The Forum's 25 participants — scholars, clinicians, policymakers, scientists, and other experts — explored the challenges and consequences of emerging therapeutic developments in genetics.

To provide a baseline of knowledge for all participants, the conference began with a review of recent scientific work and its impact on health care and the policy implications of the new genetics. Participants also discussed a commissioned paper on recent work in genetic counseling.

The meeting continued with presentations of five additional commissioned papers on:

  • Cancer and cell therapies.
  • Embryos and pre-implantation diagnosis.
  • HIV/AIDS therapy and stimulation of the immune system.
  • Vaccines.
  • Xenotransplantation (transplanting across species).

Conference attendees wrestled with some of the difficult ethical, legal, and social issues (ELSI) that society must address as these new therapies increase in prevalence and success.

Recommendations

At the concluding session of the conference, forum participants began to craft a set of joint observations and recommendations. The group continued to shape this document over the next several months via telephone, mail, facsimile, and email. The document, the "1997 Sun Valley Forum on National Health, The New Genetics: Challenges and Consequences of Therapeutic Developments," was published as a Summer 1998 Supplement to the Western Journal of Medicine.

Recommendations from the Sun Valley Forum regarding new therapeutic developments in genetics included the following:

  • Greater interaction between the general public and the scientific community needs to occur to increase public understanding of scientific advances in general, and genetics in particular, as well as of related ethical, legal, and social issues.
  • Workable, comprehensive definitions of the terms genetic information, genetic testing, and genetic screening should be developed, uniformly adopted, and widely disseminated.
  • The general public should receive adequate, comprehensible information about genetic advances. This should occur at all levels, including formal public education beginning in elementary school, patient education, and targeted education of media, judges, elected officials, businesspersons, and other community leaders.
  • Societal commitment to, resources devoted to, and activities aimed at disease prevention should be dramatically enhanced.
  • Since genetic issues involve not only individual patients, but also a patient's family members, research should be conducted into issues concerning consent and notification.
  • More molecular, environmental, behavioral, and epidemiological research is needed to determine the sensitivity and specificity of genetic markers and to measure risk for disease.
  • Archival patient materials (e.g., tissue samples and medical records) should continue to be accessible for genetic research in coded but linkable form under a general consent mechanism, with appropriate protection of patients.
  • Funding for programs that examine the ELSI of genetics should be preserved. This was done in the ELSI program of the Human Genome Project, creating a model for the use of federal research funds that should be replicated, as appropriate.
  • Greater attention should be devoted to preventing HIV infection and additional, cost-effective therapies for HIV/AIDS should be developed.
  • Greater attention should be devoted to creating a comprehensive, national vaccine policy that encourages vaccine development and ensures the purchase and use of the most effective and efficient vaccines.
  • Specific guidelines should be developed prior to clinical trials to avoid the transfer of disease from animals to humans or across other species in the course of xenotransplantation.

Funding

The Robert Wood Johnson Foundation (RWJF) provided a $37,500 grant in partial support for the conference. Additional support was provided by Schering-Plough.

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