Asserting Self-Determination in an Age of Biocolonialism Debra Harry, Ph.D. (ABD) Executive Director Indigenous Peoples Council on Biocolonialism Global Forum on Bioethics in Research December 2008 Auckland Aotearoa

Stone Mother

Kooyooee

Wovoka Numaga

Who are Indigenous Peoples? Estimated 370 million worldwide Original inhabitants of traditional territories (i.e., now known as US) Distinct language, culture and social structures Culturally, socially and politically defined 500+ federally recognized Tribes & Alaska Native Villages (government-to-government relationship) + other non-federally recognized Tribes and other Indigenous peoples whose lands are occupied by the US

Human Population Genetics Medical Genetics Type-2 Diabetes in Tohono O`odham, Havasupai, Tongans Rheumatoid Arthritis in Nuu-Chah-Nulth Behavioral Genetics Alcohol gene in a Southwest tribe “warrior gene” in Maori (propensity to violence, smoking, gambling) Anthropological Genetics Human Genome Diversity Project (HGDP) National Geographic Society’s Genographic Project Ancient DNA Study

Nuu-Chah-Nulth

Research Historically Problematic Top-down Outside-in Misappropriates Indigenous knowledge or resources

Research in Indigenous Pop Culture And the anthros still keep coming Like death and taxes to our land; To study their feathered freaks With funded money in their hand Like a Sunday at the zoo, Their cameras click away Taking notes and tape recordings Of all the animals at play. Here comes the anthros, Better hide your past away. Floyd Red Crow Westerman, Here Come the Anthros

Commercializing Human Genes US DHHS and NIH patent application for Guyami woman’s cell line for unique antibodies to a virus possibly useful in HIV/AIDS and leukemia US Dept. of Commerce patent application for Solomon Islanders’ T- cell line

Hagahai Patent United States Patent No. 5,397,696

Common Problems & Concerns Assumption of open access for research Indigenous peoples bear the risks, no benefits - False promise of economic & non-economic benefit sharing Lack of informed consent Widespread secondary uses of samples Potential for coercion Alienation of genetic materials and IK Unwillingness to repatriate misappropriated genetic material

NGS Genographic Project May 2007-NYC

Conflicting Knowledges Specific language in the consent form states, “ it is possible that some of the findings that result from this study may contradict an oral, written or other tradition held by you or by members of your group. ”

HGDP-Vulnerable Populations “Consent alone cannot justify research on populations that will not be able to benefit from it because such research violates basic principles of social justice & equality. Research subjects can make a gift to researchers or humanity, but the validity of such a gift in the context of studying genetic diversity, especially of isolate populations, is too problematic to provide the sole justification for the research.” (National Research Council Report on HGDP, 1997)

Havasupai Tribe of Arizona The Havasupai Tribe agreed to participate in diabetes research, however, ASU, instead did research on schizophrenia, inbreeding, and ancient human migration without their consent. Tilousi v. ASU (filed Feb. 26, 2004, pending) Havasupai Tribe v. ASU (filed Mar. 2004, dismissed May 2007)

Changing the Research Paradigm - Internal Processes - External Relationships

Context Indigenous Peoples are Rights-holders not stake-holders

IPs’ Framework for Analysis 1.Human Rights  International  Self-Determination   Domestic Context  2.Culturally-based Decision-making           

Human Right of Self-Determination “All peoples have the right of self-determination. By virtue of that right they freely determine their political status and freely pursue their economic, social and cultural development.” (Art. 1.1 International Covenant on Civil & Political Rights; Art. 1.1 of International Covenant on Economic, Social & Cultural Rights) United Nations Declaration on the Rights of Indigenous Peoples (Sept. 13, 2007)

Defining A Research Agenda for Indigenous Peoples Who decides what research should occur? Who will do the research? Who will own and control the research and its outcomes? Is it driven by actual need? Who do we intend to benefit?

Indigenous Centered Research Is mindful of the laws of Nature Protects cultural heritage Protects community, individuals Respects protocols Part of a process

Culturally-Based Decision Making Sources of Cultural Values Traditional stories Creation stories Traditional teachings “Original Instructions” Natural Law Protects Cultural Heritage Serve as grounds for contemporary decision- making

Common Indigenous Values All life is equal All life has spirit Responsibility to respect all life Relationship to all life Respect for future generations

Core Values Honesty Respect Sharing Jim Dumont (Anishnaabe elder) “ Sharing requires that actual sharing takes place…it was said that we are to open one hand (kindness and sharing) but never open the other hand (protection).”

Two Row Wampum Two Row Wampum- Haudenosaunee (Iroquois) and Dutch Treaty (1514), subsequently also with the English and Americans. Reflects the existence of parallel societies as equals going down the river of life Silver covenant chain: Trust, Friendship, Peace.

Equitable Partnerships in Research Promotes, respects, and protects tribal sovereignty Respects Indigenous methodology Accurately speaks to the intended audience (not sanitized or watered down). Recognizes and values Indigenous contributions, expertise, and knowledge Based on trust, respect, and transparency Centers Indigenous researchers in the research process

Seventh Generation In every decision we make, in every action we take, we must take into consideration it’s impact on the seventh generation yet to come. - Great Law of Peace of the Haudenosaunee Nations