Ethics, Consents, Commitments

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Ethics, Consents, Commitments

• Kristen M. Swanson
• May 20, 2004

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Protection of Human Rights

• Right to self-determination
• Right to privacy and dignity
• Right to anonymity and confidentiality
• Right to fair treatment
• Right to protection form discomfort and harm.

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Principles of Intervention Research

• Internal validity
• External validity
• Control
• Randomization
• Measurement
• Manipulation of the independent variable
• Can be replicated by others / manualized

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Principles of Community Based-Research (UW Board
of Health Science Deans)

• Involve community at earliest stages
• Communities should be empowered to identify their
  own desires for research about or for themselves
• Community partners should have real influence on
  project goals and directions taken
• Research processes and outcomes should benefit
  the community
• Community members should be involved in
  interpretation of data and distribution of
  results
• Partnerships should outlive the project

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Research with Socially Vulnerable Populations

• Who are the socially vulnerable?
• Groups that society has discriminated against,
  stigmatized, or marginalized, and thus research
  may add to the social harms they experience.
• Potential harms?
• Fostering discrimination and stigmatization
• Disrupting the community/tribes values making
  public information about the tribe that belongs
  to the tribe
• Disruption of self-understanding
• Raised expectations that lead to disappointment
• Increased distrust in health care / universities
• Dignity harms insults to the tribes respect,
  control, values

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Recommendations Research with Vulnerable Groups
(Guidelines written by I.H.S.)

• Consult with the community in design of
  questions, aims, methods, dissemination plans
• Identify just who equals the community look to
  find stakeholders people who have the right to
  speak up on their own behalf
• Discuss protocol with community or tribes IRB or
  their designated IRB (could be I.H.S.)
• Do not confuse Tribal Council or community
  permission to conduct the study with Tribal or
  community IRB review.
• Obtain permission of community / tribe to
  disseminate findings.