Indigenous Genomics Alliance Core

UW CGHE Team: Rose James, Wylie Burke, Ron Whitener, Dana Gold, Helene Starks, Michelle Montgomery

• Identify individuals & groups engaged in debate around Indigenous values and genomic research ethics;
• Define the scope and nature of these organized or informal discussions;
  • Are they around a particular project? Is the project funded, planning stages?
  • What stakeholders are involved?
  • Partnership models
• Provide support, facilitation, consultation, or resources to promote proactive dialogue toward development of recommendations for genomic or genetic research with Indigenous communities;

Some key groups:

1. Ethics of Research in Indian Country (ERIC) – UW researchers and administrators (human subjects division, OSP, etc);
   1. Local and regional tribal-university research agreement issues
   2. Institutional policy development
2. Pharmacogenetics Research Network (PGRN) – UW CGHE, UF CANHR, UM, YKHC, SouthCentral Foundation, Salish Kootenai, NW tribes(?);
3. Dissemination of Research grant – UW CGHE, UF CANHR, YKHC, Group Health;
4. International IGA – reps NZ, AU, CA, US;
   1. Healing of Our Spirits Worldwide conference (Honolulu, Sept 2010)
   2. Mᾱori code research ethics – support development of process for national implementation (proposal underway)
   3. Resources to support facilitation of dialogue around Native Hawaiian bio- or sperm bank
   4. Involved in international dialogue and support network.
   5. Strategic alliance to further each others’ projects and goals
   6. Share knowledge, models, strategies, resources across countries
   7. Develop international ethical framework, code or recommendations to inform national and international policies around Indigenous genetics research issues