A Community Forum on Genetics: DNA, Health, and Social Justice

A Community Forum on Genetics: DNA, Health, and Social Justice

Hosted by the University of Washington
Sponsored by the National Human Genome Research Institute

	William H. Gates Hall, University of Washington Saturday, May 21, 2005 9:00 a.m. - 3:00 p.m. Agenda

Overview

The National Human Genome Research Institute's (NHGRI) Education and Community Involvement Branch (ECIB), in coordination with the University of Washington, coordinated A Community Genetics Forum: DNA, Health, and Social Justice to engage communities from the state of Washington in an interactive dialogue regarding the implications of genome research on personal healthcare and its effects on society. Formerly known as "Consumer Day," A Community Genetics Forum is designed to inform and empower diverse communities with the knowledge needed to take advantage of the genome era.

• 2005 Community Genetics Forum Executive Summary
  From the University of Washington
  
  
• 2005 Community Genetics Full Report
  From the University of Washington

The University of Washington convened a community advisory group to inform the planning of the Forum.

The members were:

• Alison Shigaki, International Community Health Services
• Clarence Spigner, University of Washington Health Services
• Henrietta L. Taylor Knight, Country Doctor Community Health Centers
• Ira SenGupta, Cross-cultural Healthcare Programs
• Jim Schier, Community Member
• June Beleford, Public Health Seattle King County
• Leah Ceccarelli, University of Washington Communication
• Lisa Stone, Northwest Women's Law Center
• Maile Taualii, Urban Indian Health Institute/Seattle Indian Health Board
• Robin Agnew-Evans, American Lung Association of Washington
• Rev. Sanford Brown, Church Council of Greater Seattle
• Yalonda Sinde, Community Coalition for Environmental Justice
• Elaine Ishihara, Asian Pacific Islander Coalition Against Tobacco

A 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.

Speakers and Session Facilitators:

• Francis Collins, Director, National Human Genome Research Institute
• Sharon Terry, Executive Director, Genetic Alliance
• Ralph Forquera, Executive Director, Seattle Indian Health Board
• Makani Themba-Nixon, Executive Director, The Praxis Project.

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.

Topics for discussion, as identified by community groups in the state of Washington:

• Using Genetics in Healthcare
• Control of DNA Samples: Genetics Research and Community-Campus Collaborations
• Testing for Ancestry: Race and Genetics
• Racial Profiling and DNA Evidence
• Behavior and Genetics
• Implications of Genetics for Environmental Justice
• Implications of Genetics for Environmental Justice
• Careers in Genetics

NHGRI Staff who led breakout sessions:

• Vence Bonham, J.D., Chief, Education and Community Involvement Branch
• Francis Collins, M.D., Ph.D., Director, NHGRI
• Phyllis Frosst, Ph.D., Science Policy Analyst
• Alan Guttmacher, M.D., Deputy Director
• Belen Hurle, Ph.D., Senior Research Fellow
• Tim Leshan, M.P.A., Chief, Policy and Program Analysis Branch
• Colleen McBride, Ph.D., Chief, Social and Behavioral Research Branch
• Vivian Ota Wang, Ph.D., Program Director, ELSI Program
• Larry Thompson, Chief, Communications and Public Liaison Branch
• Elizabeth Thomson, R.N., M.S., Program Director, ELSI Program

For more information, go to: DNA, Health, and Social Justice: A Community Genetics Forum [depts.washington.edu]

Contacts:

Sarah Harding, NHGRI
Community Outreach Analyst
E-mail: sharding@mail.nih.gov

Chetana Acharya, University of Washington
Phone: (206) 616-2643
E-mail: cacharya@u.washington.edu

Joon-Ho Yu, University of Washington
Phone: (206) 616-4979
E-mail: joonhoyu@u.washington.edu

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