Ethical Obligations toward Individual Participants in CBR

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Ethical Obligations toward Individual
Participants in CBR

• Roy Cain
• School of Social Work
• McMaster University

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Ethical Obligations in CBR

• CBR faces the same obligations as academic
  research, plus
• Individual, community, GIPA peer researchers
• Most ethical issues are not method-specific, but
  they can be more pronounced and difficult to
  manage, depending on approach.
• Ethical challenges at every phase of the
  research, up to and including dissemination.

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• Ensuring voluntary participation
• Protecting the privacy of participants
• Weighing risks and benefits of participation
• Ensuring informed consent

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Voluntary Participation

• Free from control, coercion, or undue influence
• Challenges in recruitment
• Awareness of power in relationships
• Extra care recruiting captive audiences
  (students, clients, colleagues, employees)
• Particular vulnerabilities re physical or mental
  illness, age, immigration status, incarceration
• How to manage
• Passive recruitment use of third party,
  invitation by email, poster or letter
• Make it easy to say no, give them time to
  consider
• Outline risks/tensions for potential participants
• Agency wont know who participates, researcher
  may not know
• Make non-participation invisible

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Voluntary Participation

• Right to withdraw without consequence
• Clearly stated right to withdraw, reminders
• What will happen with their information
• Particular concerns in qualitative research
• Sometimes hard to withdraw, visible, embarrassing
• Fear loss of support or services
• Fear of appearing rude, disrespectful
• Honoraria
• Increasingly common practice
• Enough to be respectful
• Undue pressure, coercion
• What happens if they withdraw

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Privacy

• Anonymity is preferred, confidentiality when
  necessary
• Ask only what is needed
• Sample size
• Report aggregate data
• Include more than one setting
• Change potentially identifying information in
  reports

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Privacy

• Transparency about limits to confidentiality
• Duty to report
• Focus group
• Small community
• Location of study
• Revealing identity when asked by participant
• Protecting security of data

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Risk of Harm/Benefits

• All research involves some risk of harm
• Risks must be weighed against the potential
  benefits of the study benefit to community,
  improvement of services, informing participants
  about findings
• Proportionate ethics review
• Probability and magnitude of risk
• More risky, greater care in review

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Minimal Risk

• if potential subjects can reasonably be expected
  to regard the probability and magnitude of
  possible harms implied by participation in the
  research to be no greater than those encountered
  by the subject in those aspects of his or her
  everyday life that relate to the research, then
  the research can be regarded as within the range
  of minimal risk (TCPS art. 1.4, emphasis added)
• More than minimal risk requires greater REB
  scrutiny

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Risks/Benefits

• Physical Risks
• Psychological Risks
• Loss of self-confidence, embarrassment, distress,
  upset, guilt
• Social Risks
• Loss of respect by others, loss of status or
  reputation if not confidential, stigmatization

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Risks/Benefits

• Managing risks
• Make aware
• Skip questions, take a break
• Withdraw from study
• Availability of follow-up support
• Review transcript, quotes, draft reports
• People can assume risk of harm
• Ethical obligation to others
• Identifying information about others
• Abuse, high risk behaviour
• Risk to community

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Informed Consent

• A process, not a form time for questions and
  deliberation
• Must be clear from participants perspective that
  they are being invited to participate, who is
  conducting the research, what will happen (the
  research procedures), foreseeable risks
  benefits
• Voluntary nature of involvement, withdrawal
• Written versus verbal consent
• Competence
• Comprehensible to target population

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Ethics Review

• Need to show that you have thought through such
  issues, but it is just the beginning.
• Ethical considerations do not end with the ethics
  clearance.