Decoding the Human Genome Raises New Questions, Practical and Ethical

Conference on genetics for health professionals and the public

The State of Arizona Department of Health Services held a conference on the future impact of advances in genetics. "Genetics in the 21st Century: Crisis and Opportunity" took place May 12–14, 1999, in Mesa, Ariz.

The 125 attendees included representatives of:

  • the Arizona, Colorado, and New Mexico state health departments
  • county health departments
  • the Indian Health Service
  • the Apache tribe
  • the California State University Department of Sociology
  • the Sickle Cell Anemia Society
  • Southwest Human Development.

Key Results

The conference covered a wide variety of topics, including:

  • The use and misuse of genetic information.
  • Access to that information and the potential for insurance or job discrimination.
  • The benefits and limitations of genetic testing; and other social, legal, and ethical issues.

A plenary panel discussed the ethical implications of genetic testing for special populations.

Presenters included state health officials, researchers, genetic counselors, and consumers.

Presentations and the panel follow:

Presentations

  • Leslie Biesecker, M.D., National Human Genome Research Institute (Bethesda, Md.), "Public Forum: Human Genome Project — Ethical, Legal, and Social Implications for the 21st Century — Where Do We Go Now That We Know?"
  • Leslie Biesecker, M.D., National Human Genome Research Institute (Bethesda, Md.), "Human Genome Project — Impact Study for the 21st Century — Where Do We Go Now That We Know?"
  • Kirk Aleck, M.D., Section of Medical and Molecular Genetics, Department of Pediatrics, University of Arizona (Phoenix, Ariz.), "Clinician's Perspective: Impact of the Human Genome Project."
  • Kris Holladay, Support Organization for Trisomy 13, 18, and Related Disorders (Mesa, Ariz.), "Family Perspective on the Human Genome Project."
  • Ben Wilfond, M.D., National Human Genome Research Institute (Bethesda, Md.), "Ethical Implications of the Human Genome Project."
  • Cynthia A. Moore, M.D., Ph.D., Center for Disease Control and Prevention (Atlanta, Ga.), "Challenge for Health Professionals and Consumers in the Genetics Arena."
  • Marianna Bridge, R.N.C., M.S., Office of Women's and Children's Health, Arizona Department of Health Services (Phoenix, Ariz.), "Arizona's Response to the Challenge."

Plenary Panel

  • "Ethical Implications of Genetic Testing among Special Groups."
    • Frank Dukepoo, Ph.D., Department of Biological Sciences, Northern Arizona University (Flagstaff, Ariz.).
    • Jan Watson, M.D., Perinatal Care Associates (Phoenix)
    • Becca Hornstein, Council for Jews with Special Needs (Phoenix)
    • Mark Trombino, Little People of America (Phoenix)
    • Christopher Cunniff, M.D., Section of Medical and Molecular Genetics, Department of Pediatrics, University of Arizona (Phoenix).

Publication

A small portion of the grant funds were used to print the 4th edition of Genetic Services in Arizona, a guide compiled by the state's Genetics Advisory Committee and published by the grantee organization (Phoenix: Arizona Department of Health Services, 2000). The guide details the purpose and availability of the full range of genetic services in the state. The Arizona Department of Health Services plans to develop a fax listserv to transmit information on genetics, newborn screening, and newborn hearing screening to hospitals and health care providers in the state.

Funding

The Robert Wood Johnson Foundation (RWJF) provided partial support for the conference with a $25,000 grant.

Other funding was provided by the March of Dimes, Mountain States Regional Genetic Services Network, and St. Luke's Charitable Trust.

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