Developing a Framework to Guide Genomic Data Sharing and Reciprocal Benefits to Developing Countries and Indigenous Peoples: A Colloquium

January 7-8, 2009
Georgetown University, Washington, DC

Hosted by
O’Neill Institute of National and Global Health Law
Georgetown University
and
Personalized Health Care Initiative
U.S. Department of Health and Human Services

This report is available on the Internet at:
http://aspe.hhs.gov/sp/reports/2009/genshare/index.shtml

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Abstract

The O’Neill Institute for National and Global Health Law invited twelve thought leaders with extensive experience in the conduct of biomedical research among indigenous peoples and developing countries to a colloquium at Georgetown University on January 7-8, 2009. The colloquium addressed a basic question: as genomic science develops across the world, how can the global community assure that indigenous nations and developing countries reciprocally benefit from their contributions to research? We invited thought leaders with broad experience with biomedical science research, public health, indigenous peoples and developing nations. On Day One of the colloquium, each thought leader gave a fifteen minute talk outlining key points on the colloquium’s basic question based on their individual experiences (see schedule and summary of individual contributions). Each thought leader spoke during one of three sessions, namely “Hearing Indigenous Perspectives”, “Hearing the Perspectives of Developing Countries” and “Implications for Genomics and Healthcare”. Group discussion of the talks occurred at the end of each specific section as well as the end of the day. Day Two opened the floor entirely for group discussion of the issues and next steps. Members of the O’Neill Personalized Medicine Workgroup observed the presentations and contributed to general discussion. This report offers a thematic analysis of the issues and recommendations of the two days’ work.

Table of Contents

• Developing a Framework to Guide Genomic Data Sharing and Reciprocal Benefits to Developing Countries and Indigenous Peoples: A Colloquium
• Thematic Analysis of Colloquium
• White Paper Prepared by the research team as background to the colloquium
  • Introduction
  • Project Design and Methods
  • Common Concerns about Genomic Science among Indigenous Peoples
    • Case Study 1: The Human Genome Diversity Project
    • Case Study 2: The National Geographic Genographic Project
    • Case Study 3: The International HapMap Project
    • Case Study 4: Misuse of biological samples from the Havasupai Indians
    • Case Study 5: Misuse of biological samples from the Nuu-chah-nulth
  • Survey of Existing Guidelines for Genomic Research with Indigenous Populations Appendix - Examples from Biodiversity
• Glossary of Terms
• Colloquium Schedule
• Colloquium Presenters’ Biographical Sketches
• Research Team

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Last updated:  04/09/2009