TYPES OF COMMUNITY HARM

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TYPES OFCOMMUNITY HARM

• Connie Z. Garcia, Acoma Pueblo
• Albuquerque Area Indian Health Board, Inc.
• 5015 Prospect Avenue, NEAlbuquerque, NM 87110
• Phone [phone]
• Email cgarcia_at_aaihb.org

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DEFINITION

• Any type of potential injury or hurt that
  directly, or indirectly, results from research
  conducted within a community.

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POTENTIAL HARM

• Research on human beings has the potential for
  causing harm to
• INDIVIDUALS
• GROUPS (communities)
• SUB-GROUPS (sub-communities)

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CATEGORIES OF HARMS

• PHYSICAL
• PSYCHOLOGICAL
• SOCIAL
• ECONOMIC
• LEGAL
• DIGNITARY
• RELATIONAL

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CATEGORIES OF HARM

• PHYSICAL
• Community may become distrustful of not only all
  research, but even the health care system itself.
• RESULT Communitys health may be adversely
  impacted for years.

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CATEGORIES OF HARM

• PSYCHOLOGICAL
• Community may experience loss of privacy, shame,
  or stigmatization.
• RESULT Community members may become distrustful
  and disempowered. If stigmatization is
  internalized, community may suffer long-term
  effects.

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CATEGORIES OF HARM

• SOCIAL
• Community could experience stereotyping,
  discrimination and stigmatization.
• RESULT Community members may be ostracized and
  viewed as social outcasts. If stigmatization is
  internalized, harm may linger for decades.

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CATEGORIES OF HARM

• ECONOMIC
• Community may lose economic or societal status.
• RESULT Effects of adverse publicity may impair
  the communitys ability to sustain its economy.

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CATEGORIES OF HARMS

• LEGAL
• Public policy toward Native communities may be
  influenced if research reveals presence or
  absence of genetic markers.
• RESULT Tribal sovereignty may be undermined.
  Federal trust responsibility could diminished if
  treaties are abrogated.

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CATEGORIES OF HARMS

• DIGNITARY
• Community norms may be violated. Stories of
  origin may be devalued.
• RESULT A community may suffer loss of pride and
  control. Stigmatization may linger for years
  after initial insult.

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CATEGORIES OF HARM

• RELATIONAL
• Community may distrust researchers who misuse or
  abuse their relationship.
• RESULT A community may be reluctant to enter
  into potentially beneficial research
  partnerships.

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EXAMPLE

• Results of a study on alcoholism in an Alaskan
  community were revealed at a news conference in
  Pennsylvania.

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EXAMPLE

• Epidemiological study on syphilis in a
  Southwestern Indian tribe.

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EXAMPLE

• Research on the genetics of diabetes among the
  Havasupai Tribe.

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EXAMPLE

• Research on severe atypical arthritis among the
  Nuu-chah-nulth First Nations people in Canada.
• .

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How can we protect our Tribal communities from
harm?

• Build respectful relationships.
• Build the skills of the community and the
  researcher.
• Promote interdependence.
• Engender commitment and reciprocity.

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Building Relationships

• Belonging
• Honors infancy and childhood
• Outcome
• - Builds foundation for community consultation.

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Building Skills

• Mastery
• Acknowledges adolescence
• Outcome
• - Individual and community empowerment -
  Confidence to set parameters for research

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Promoting Interdependence

• Interdependence (working together)
• Honors adulthood
• Outcome
• Mutually-beneficial partnerships between, and
  among, Tribal communities and researchers.

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Engendering Commitment and Reciprocity

• Generosity (giving back)
• Honors elders
• Outcome
• True community-based participatory research that
  elevates the health status of Native people.