Ethics in Mental Health Research

1
Ethics and Community Engagement in Mental Health
Research

• James M. DuBois, PhD, DSc
• Project Director, NIMH R13 grant
• Hubert Mäder Professor and Dept Chair, Health
  Care Ethics
• Saint Louis University

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Why Engage Communities?

• The pragmatic reasons
• Recruitment, compliance, improving public health
• Case of HIV research in 1980s
• Research held out the only prospect for receiving
  treatment
• Participants in gay community banned together to
  share study medications (mixing placebos with
  active medications to ensure some dose of active
  medication)
• Compliance with research protocol required
  negotiating a protocol that was satisfactory to
  the community

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Why Engage Communities?

• Respect for communities
• We show respect for individual participants by
  obtaining their consent
• Should we have a process for obtaining permission
  or at least informing communities of research
  that could affect them?
• E.g., research results may stigmatize a
  community, some communities may grow fatigued if
  studied too often, etc

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Why Engage Communities?

• Engagement can provide empowerment and a voice
• When participants are vulnerable, regulations
  require additional protections
• See DuBois, Cottler, Callahan (2009) for a list
  and rationale for such protections in substance
  abuse researchwith participant attitudes toward
  them
• Should not participant communities have a say
  regarding the kinds of protections that are
  offered?
• Similarly, research is supposed to provide
  benefits. Should not the key stakeholders have a
  say in setting research agendas, i.e., deciding
  what goals and benefits should be pursued?

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Growing Government Commitment to Community
Engagement

• 1997 CDC Report, Principles of Community
  Engagement
• 2006 NIH, a required key function of Clinical and
  Translation Science Awards (CTSAs) is community
  engagement www.ctsaweb.org
• SAMHSA has held multiple summits that have
  produced reports
• NIMH established the Office of Constituency
  Relations and Public Liaison (OCRPL) which
  supports the NIMH Alliance for Research Progress

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Why Focus on Mental Health Research?

• Participants in mental health research may be
  vulnerable
• Lack decisional capacity, be institutionalized,
  suffer from poverty, suffer from social stigma
• Historically, there have been significant abuses
  of persons with mental health disorders
• The research priorities of mental health
  consumers are not always those of researchers

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Do We Do a Good Job Already?

• Regulations require IRBs to have a community
  member
• Anderson (2006) interviewed 16 IRB community
  members
• Most were unlike the institutions study
  populations
• Wealthier, healthier, and better educated
• It is unreasonable to expect 1 IRB member to be
  able to represent many diverse research
  communities

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Do We Do a Good Job Already?

• While Community-Based Participatory Research
  (CBPR) is fairly common in community health
  research, it is uncommon in most biomedical
  research and in a lot of services research
• While funding agencies often have community
  engagement committees, individual researchers
  develop actual proposals.
• At present, there is no general requirement that
  researchers engage communities in project
  development

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What are Obstacles to Community Engagement?

• Lack of knowledge about how to do it
• Community members may lack the knowledge of
  science required to serve as full fledged
  co-investigators
• Communities may have (research) priorities very
  different from researchers or funding agencies,
  which may provide a disincentive for researchers

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What Models of Community Engagement Exist and
Work Well?

• This will provide a theme for our conference and
  plenary discussion session
• Presentations will examine
• Research on community and participant attitudes
  toward matters of research ethics
• Case studies of successful community engagement
  projects in behavioral and mental health research
• Discussion among presenters and conference
  participants

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Acknowledgements

• Special thanks to
• The National Institute of Mental Health, R13
  conference grant program
• Saint Louis Universitys
• Department of Health Care Ethics
• Department of Neurology and Psychiatry
• Graduate School
• Missouri Institute of Mental Health
• The Institute for Clinical and Translational
  Sciences at Washington University in St. Louis

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Resources

• We will post an extensive annotated bibliography
  and selected slides from conference at
• www.emhr.net
• We will also eventually post there a link to a
  paper from the speakers and expert panel on
  Ethics and Community Engagement in Mental Health
  Research