Models of Community Engagement in Research Ethics

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Models of Community Engagement in Research Ethics

• Joan E. Sieber
• Editor-in-Chief
• Journal of Empirical Research on Human Research
  Ethics
• Joan.sieber_at_csueastbay.edu
• [phone]

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• For what was life given to us?
• Suppose we do nothing and die we have swindled
  society.
• Nature, in giving us birth, has saddled us with a
  debt which we must pay off some time or other.
• -- William James

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5 Themes

• Communicating new ideas.
• Sustaining relationships in longitudinal
  research.
• Indentifying and satisfying all stakeholders.
• Building trust. Preventing mistrust.
• Transparency and inclusiveness in decision making.

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Communicating New Ideas

• Scientific literacy. Do people understand you
  when you
• Plan the project with them?
• Discuss the project with them?
• Get informed consent?
• Gather data from them?
• Share the findings with them?

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Kinds of New Ideas

• Meaning of words and phrases
• Cognitive Interviewing tool from survey design.
• Analogies begin with an idea they understand.
• Evaluation of complex ideas
• Focus groups tool from marketing research that
  gives people a chance to digest and discuss a new
  idea and examine what they think of it.

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Cognitive Interviewing

• Developed as a formal method in the 80s by
  cognitive and survey researchers studying HIV
  transmission to learn how a given group describes
  a concept what words they use.
• Known as CASM (Cognition and Survey
  Methodology).
• -- Willis, G. (2006). Cognitive interviewing as
  a tool for improving informed consent. Journal of
  Empirical Research on Human Research Ethics,
  1(1), 2-23.

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Two Methods of Cognitive Interviewing

• Think Aloud method Tell me what you are
  thinking when I tell you that you will be
  randomly assigned to a treatment group or a
  placebo control group, with a cross-over design.
• Probing method Tell me, what, to you, is
  random assignment? What, to you, does it mean
  to be assigned to a placebo control? What is a
  cross-over design? tell me more about that.

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Find an Appropriate Analogy
Corneli, et al. (2006). Using formative research
to develop a context-specific approach to
Informed consent for clinical trials, JERHRE,
1(4), 45-60.
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Focus Groups

• People explore a new idea together.
• People can raise questions and concerns.
• People reveal what they consider risks and
  benefits of participation.
• People reveal their misunderstandings.
• Important considerations are surfaced.

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Some Precautions

• Create comfort feed them!
• Make sure it is a compatible mix, (e.g., age,
  gender, SEC, health issues).
• Take long enough to surface real views.
• Do enough groups to get the same responses many
  times.

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Sustaining a Longitudinal Study

• Framingham Heart Study sustained for 61 years.
• Third generation is now participating.
• Produced over 1200 key articles in prestigious
  scientific journals
• Most successful longitudinal study ever
  conducted.
• Now vast data on behavioral and genetic risk
  factors.
• lt1, used, Amazon.com

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Some Keys to Success

• Live among the people, and respect them as
  equals.
• Communicate via many venues newspaper, focus
  groups, town meetings, invitation to drop in.
• Employ community members.
• Communicate continually throughout the study.
• Have clear agreements regarding procedure,
  confidentiality, data sharing, benefits.
• - Levy Brink. A Change of Heart.
• - Nancy Silka (2008), Creating Community Research

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A Tale of two Government-Sponsored Longitudinal
Studies

• Framingham
• Begun 1948.
• Pride of the community.
• Framingham residents now living heart healthy
  lifestyle of their own accord.

• Tuskegee
• Begun 1932.
• Ended in disgrace in 1972.
• Harmed people.
• Created distrust of health research.

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Stakeholders

• The stakeholders to identify are the ones who
  will want to stop your research.
• Who are they?
• How do you find them?
• How to you win them over?

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Trust Fragile but Essential

• Because of the ambivalent, negotiable, dynamic
  and reciprocal nature of trust, gaining maximum
  trust is not an ethically appropriate objective.
  A more desirable goal is to strive for optimal
  trust, compatible with a degree of trust-wariness
  or skeptical trust.

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How Framingham Almost Blew It

• The data selling debacle.
• Some take home lessons
• Academic people easily make some community people
  feel inferior and insecure.
• People are mindful of economic exploitation.
• Privacy is invaded when there is access without
  permission.
• The press can fan the flames of mistrust.

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Transparency Inclusiveness

• The longevity of the project.
• Candor and cooperation of participants.
• Validity of you data.
• Willingness of stakeholders and participants to
  support the project when funding is threatened.
• Keeping the press sympathetic to your research.

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Some Useful Articles

• Gordon Willis Cognitive Interviewing.
• Amy Corneli, et al. Using analogies.
• Linda Silka Helping a Community Manage Research
  within it.
• Julie Postma A demonstration of the difficulty
  researchers have treating subjects as equals.
• Nancy Kass The desire of subjects to hear that
  they will get better through participation.

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In Conclusion

• Share your experiences with these kinds of tools.
• Contact me to discuss, ask questions, share
  perspectives Joan.sieber_at_csueastbay.edu
• JERHRE would welcome manuscripts empirically
  investigating ethical issues.
• Thank you.