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Ethical Issues

Greene (2013) explains that CBR inevitably "places researchers in the 'terrain of the ethical', because even as we attempt to predict the spaces and moments where ethical tensions will emerge before the study begins, we cannot, or are not always prepared to address the range of ethical tensions that occur in the 'the thick of things'.

 

The relationship between community-based research and ethics is like a plant:
The earth holds our knowledge and how that knowledge is gained;
The roots tie that knowledge to our beliefs and how we know;
The trunk or branch holds our beliefs;
The stems represent ethics and protocol;
The leaves are the collective;
One leaf is an individual.

It is in the ethical space where two worlds (academic and community) come together that we have the opportunity.
Bonnie Freeman (November 25, 2014)


 

Ethical issues for researcher, REB and faculty to reflect on:

 

Researcher

Preparation, background, purpose, objectives

 

 

  • Is the research topic a relevant one to the community?  Is it wanted by the community?
  • What actions are community members already involved in relation to the research topic?  *Not always limited to the literature
  • Is the community involved in the decision-making process?
  • Do you know your community? i.e. what resources are present; their ‘ethics’ protocols; who are the gatekeepers?
  • Am I the right person to be doing this research?
  • Who benefits from this research? How?
  • Are you realistic about your resources, including time, money, social capital? 
  • What ethics protocols might be desired by the community but not demonstrated within the research project? 
  • What might be expectations from community regarding the research or outlying issues?  Keep in mind the community need for change
  • Always paying attention to power/empower

 

Decision-making

  • Is the community involved in the decision-making process?
  • Is the investment of energy and time of the community commensurate with the needs/wants of the researcher?

 

Research Methodology

  • How is the community involved?
  • What training or capacity-building opportunities will be built in?
  • Will the methods be sensitive to various communities (literacy, language, cultural)?
  • Consider methods that are culturally and contextually appropriate

 

Recruitment

  • Who will seek consent? 
  • How can coercion (perception of it) be minimized?
  • How will conflicts of interest be resolved?
  • Do you have a clear rationale who/for what receives compensation?
    • How is time valued?  Is all compensation monetary?
    • Keep in mind diversity of communities; where is the ‘invisible’ community? 

 

Participants

  • Will the research process include/engage marginalized (or disenfranchised) community members?  How? 
  • What supports will be put in place for all participants? Including recognition of the impact of difficult stories; support for ongoing dialogue and possible secondary trauma
  • Considering the tension of staying on track and yet supporting vulnerable groups
  • Impact of being involved in more than one study, that research history, what are the benefits/challenges?

 

Peer Research Assistants (PRA)

  • What are the benefits or potential challenges of using PRAs?  (Including how their position/relationships within their community may be affected)
  • How to maximize their involvement (including training and education)?
  • How do you maintain boundaries between multiple roles (including confidentiality)?
  • Clear understanding of roles and boundaries of team members
  • Ongoing dialogue with PRAs, regarding support, training, protocols

 

Privacy and Confidentiality

  • How will you assure confidentiality?  Group confidentiality?
  • What processes will be put in place to be inclusive about data analysis and privacy of participants?
  • How will you ensure privacy and confidentiality in a close-knit community?

 

Consent

  • What does communal consent look like? What is the relationship between communal and individual consent?
  • Whose permission is needed to talk to whom?
  • Assess what information must be shared as part of the informed consent process
  • Is consent written, spoken, recorded?  In plain language to ensure clarity and understanding

 

Outcomes and results

  • How will research be used or shared?
  • What are the new ways the research will be acted upon?
  • What are the potential benefits/harm of the research?
  • Consideration, after the research is over, what will the impact be on the community?

 

Research Ethics Board

  • CBR can/will lead the researcher/project in unexpected directions
  • Use simple and common language ensures respect, understanding and transparency
  • Upfront consultation and discussion with both researcher and community to ensure methods are reasonable, sensitive and credible
  • Incorporate perspectives from completed projects
  • Provide web-based guidelines (?)
  • Provide sample wordings and/or templates for applications
  • Ensure members have CBR training, perhaps including an online tutorial or lunch seminars
  • Provide resources for researchers (i.e. seminars, support for recruitment process)
  • Provide specific feedback and recommendations
  • Upfront consultation and discussion to both researcher and community to ensure sensitive and credible
  • May need assistance in ‘getting around’ medical model processes

 

Faculty

  • Researchers may need more involvement from their faculty advisors
  • Researchers may need assistance in forming realistic timelines
  • Help the researchers and the academy build relationships with communities (including off-campus)

 

Resources:  Flicker et al (2010), CREO, CCPH (2006), McMaster Ethics (November, 2014; March, 2015)