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Asserting Self-Determination in
an Age of Biocolonialism
Debra Harry, Ph.D. (ABD)
[email protected]
Executive Director
Indigenous Peoples Council on Biocolonialism
Global Forum on Bioethics in Research
December 2008
Stone Mother
Who are Indigenous Peoples?
Estimated 370 million worldwide
Original inhabitants of traditional territories
(i.e., now known as US)
Distinct language, culture and social
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,
Anthropological Genetics
1990 - Human Genome Diversity Project (HGDP)
2005 - National Geographic Society’s Genographic Project
Ancient DNA Study
Research Historically
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
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’ Tcell line
United States Patent No. 5,397,696
Hagahai Patent
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
NGS Genographic Project
May 2007-NYC
Conflicting Knowledges
Specific language in the consent form
“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
Indigenous Peoples
IPs’ Framework for Analysis
1. Human Rights
Domestic Context
2. Culturally-based Decision-making
    
Human Right of
“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
United Nations Declaration on the Rights of
Indigenous Peoples (Sept. 13, 2007)
Defining A Research Agenda
for Indigenous Peoples
Who decides what research should
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
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 decisionmaking
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
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
Reflects the existence of parallel societies
as equals going down the river of life
Silver covenant chain: Trust, Friendship,
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
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