Asserting SelfDetermination in an Age of Biocolonialism

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Asserting Self-Determination in an Age of
Biocolonialism

• Debra Harry, Ph.D. (ABD)
• dharry_at_ipcb.org
• Executive Director
• Indigenous Peoples Council on Biocolonialism
• Global Forum on Bioethics in Research
• December 2008
• Auckland
• Aotearoa

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Stone Mother
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Kooyooee
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Wovoka
Numaga
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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

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Human Population Genetics

• Medical Genetics
• Type-2 Diabetes in Tohono Oodham, 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
• 1990 - Human Genome Diversity Project (HGDP)
• 2005 - National Geographic Societys Genographic
  Project
• Ancient DNA Study

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Nuu-Chah-Nulth
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Research Historically Problematic

• Top-down
• Outside-in
• Misappropriates Indigenous knowledge or resources

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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

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Commercializing Human Genes

• US DHHS and NIH patent application for Guyami
  womans 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

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

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NGS Genographic Project
May 2007-NYC
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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.

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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)

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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)

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Changing the Research Paradigm- Internal
Processes- External Relationships
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Context

• Indigenous Peoples
• are
• Rights-holders
• not
• stake-holders

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IPs Framework for Analysis

• Human Rights
• ?International
• ?Self-Determination
• ? ?Domestic Context
• ?
• Culturally-based Decision-making
• ? ? ? ? ? ? ? ? ? ? ? ?

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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)

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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?

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Indigenous Centered Research

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

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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

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Common Indigenous Values

• All life is equal
• All life has spirit
• Responsibility to respect all life
• Relationship to all life
• Respect for future generations

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Core Values

• Honesty
• Respect
• Sharing
• Jim Dumont (Anishnaabe elder) Sharing requires
  that actual sharing takes placeit was said that
  we are to open one hand (kindness and sharing)
  but never open the other hand (protection).

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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.

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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

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Seventh Generation

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