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NIH

A Community Genetics Forum 2006:
Finding the Genome

Hosted by the University of North Carolina, Chapel Hill
and Duke University
Sponsored by the National Human Genome Research Institute

September 15 — 15, 2006
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Overview

The National Human Genome Research Institute's (NHGRI) Education and Community Involvement Branch (ECIB), in coordination with the University of North Carolina (UNC), Chapel Hill and Duke University held the 2nd annual Community Genetics Forum on September 14-16, 2006.

The Community Genetics Forum provided an opportunity to discuss the promises and challenges of genetics, with a special focus on the ethical, social and legal implications of genome research.

Two Forum events took place (see agendas below). The first was held at the University of North Carolina, Chapel Hill, and targeted the UNC community. The second was held at the North Carolina School for Science and Math, and targeted the general public of the Raleigh/Durham area.

For more information, visit the 2006 Community Genetics Forum Web site:

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Agenda

Friday, September 15, 2006
Time: 9 a.m.- 3 p.m.
Location: Health Affairs Campus, UNC-Chapel Hill

    Finding the Genome: Group Interests in Genetic Research and Testing

    Speakers and Session Facilitators:

    • Francis Collins, Director, National Human Genome Research Institute
    • Debra Harry, Executive Director, Indigenous Peoples Council on Biocolonialism
    • Dena Davis, Professor of Law, Cleveland-Marshall College of Law

    Topics for Discussion:

    • But Race Isn't Genetic, Is it?
    • Genetic Narratives, Group Narratives, and the Media
    • Health Disparities, Genetics, and the Rhetoric of Responsibility
    • Groups, Genetics, and Research Oversight
    • Genes, Family, and Ancestry
    • Genetics and Clinical Translation

    Forum participants had the opportunity to think about society and genetics, to learn from each other and to raise questions directly with researchers in small group breakout sessions. Individuals from NHGRI attended the symposium to help moderate and guide discussion in these breakout sessions, and to share their expertise with Forum participants.

Saturday, September 16, 2006
Time: 10 a.m. - 3 p.m.
Location: North Carolina School of Science and Math, Durham N.C.
    The Human Genome and Being Human: A Community Conversation on our DNA, Health, Values and Heritage?

    Speakers and Session Facilitators:

    • Francis Collins, Director, National Human Genome Research Institute
    • Debra Harry, Executive Director, Indigenous Peoples Council on Biocolonialism
    • Dena Davis, Professor of Law, Cleveland-Marshall College of Law

    Topics for discussion:

    • Ancestry Testing: Understanding our Heritage through DNA
    • DNA & Health: The Role of Biomedical Research
    • Genetic Enhancement & Designer Babies: Can we, should we?
    • Privacy & DNA: Who should and can know your private DNA information?
    • Genetics, Behavior, & Ethics: What do genes have to do with your personality?
    • Genetics, Heart Disease, Diabetes, and Cancer
    • The Liz Lerman Dance Exchange Workshop
    • Forensics and DNA
    • DNA Extraction! For Kids and Adults alike!
    • What's New and Exciting in Genomics Research?

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NHGRI Staff Attendees

NHGRI staff attended Forum events to lend perspectives, expertise and listen to attendees:
  • Les Biesecker, M.D., Senior Investigator, Genetic Disease Research Branch
  • Vence Bonham, J.D., Chief, Education and Community Involvement Branch
  • Francis Collins, M.D., Ph.D., Director, NHGRI
  • Carla Easter, Ph.D., Science Education Specialist
  • Milton English, Ph.D., Postdoctoral Fellow
  • Phyllis Frosst, Ph.D., Acting Chief, Policy and Program Analysis Branch, Science Policy Analyst
  • Eric Green, M.D., Ph.D., Scientific Director, NHGRI
  • Alan Guttmacher, M.D., Deputy Director, NHGRI
  • Sarah Harding, M.P.H., Community Outreach Analyst
  • Jean Jenkins, R.N., Ph.D., F.A.A.N., Senior Clinical Advisor
  • Rebecca Kolberg, Deputy Chief, Communications and Public Liaison Branch
  • Dale Lea, R.N., M.P.H., C.G.G., F.A.A.N., Health Educator
  • Vivian Ota Wang, Ph.D., Senior Advisor, Office of Behavioral & Social Sciences Research
  • Laura Rodriguez, Ph.D., Health Policy Analyst, Special Advisor to the Director
  • Elizabeth Thomson, R.N., M.S., Program Director, ELSI Program

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Last Updated: July 30, 2010