CBR 102
Ethical Issues in Community-Based
Research
INTRODUCTION
Who works for a CBO? An academic institution? Is a
student?
Who has gone through an ethical review before?
Who has written an ethics protocol?
Who works with “vulnerable groups”?
Who has obtained “consent” before?
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LEARNING OBJECTIVES
Upon completion of this workshop you will be able to:
•
Understand the importance of research ethics and “informed
consent”
•
List the fundamental elements of ethical principles
•
Identify and prevent potential ethical issues in CBR
•
Problem solve different ethical issues commonly presented in
CBR
•
Apply the Ethic Review Protocol Using Guiding Questions
•
Describe the ethics review process
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WHAT WE WON’T DO TODAY …
Magically solve major ethical dilemmas
Give you quick and easy solutions
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AGENDA
•
•
•
Define and establish need for ‘research ethics’;
Ethics Principles
Identify potential ethical issues in CBR & your project
LUNCH
•
•
•
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Workshop Scenarios
Ethics Review Process
Ethics Review Protocol & Helpful Guiding Questions
Workshop Evaluation
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EXERCISE 1 – Defining Research Ethics
1. In your small groups, discuss what is meant by the term
‘research ethics’.
2. Then, create your own definition of research ethics to
share with the large group.
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TRI-COUNCIL DEFINITION...
Morally acceptable ‘ends’
Morally acceptable means to those ‘ends’
Translation:
You need a good reason to do research, and
while you are doing it – you need to be ethical...
So you can’t use the excuse that ‘the ends justify
the means’
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HISTORIAL OVERVIEW
Tuskegee Syphilis Study – 1932
Nazi eugenics, racial hygiene, and experimentation
– 1934
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PROTECTING ‘HUMAN SUBJECTS’
Nuremberg Code – 1949
World Medical Association, Declaration of Helsinki 1964
Tri-Council of Canada – 1970s
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ETHICAL PRINCIPLES: Tri-Council 2005
1.
2.
3.
4.
5.
6.
7.
8.
Respect for human dignity
Respect for free and informed consent
Respect for vulnerable persons
Respect for privacy and confidentiality
Respect for justice and inclusiveness
Balancing harms and benefits
Minimizing harms
Maximizing benefits
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EXERCISE 2: Protecting Human Rights
Despite all of these ‘safeguards’ – we still see
unethical research happen!
In pairs, create a list of problems that
can occur when unethical research
takes place.
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COMMON PROBLEMS IN RESEARCH
• Communities feel coerced
• Communities are lied to
• Communities feel over researched
• Insensitivity to community concerns or issues
• Benefits to community are minimal
• Irrelevance to community
• Poor methodology (waste of resources)
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EXERCISE 3: Identifying Potential Ethical
Issues
Research Project Goal:
Identify support needs of non-status youth who
have experienced domestic violence.
1. In small groups, describe what your assigned stage
looks like in the project.
2. Next, identify some of the ethical issues that are likely
to occur at this stage.
3. What safeguards could be put into place?
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EXERCISE 4: Identifying Solutions to Ethical
Issues
Each group will be assigned an ethics scenario (found in
your student handout).
With your group, discuss the ethical issues involved
with your scenario.
Then, discuss how the ethical issues could be handled.
Be prepared to share your ideas with the group.
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ETHICAL REVIEW PROCESS
1. Ensures that you consider ethical issues upfront
2. Provides ample opportunity for your research team to
flesh out issues
3. Forces you to put down on paper how you will handle
potential mine-fields
4. Allows you to dialogue and problem solve before
problems actually happen
5. Ensures that other ‘objective’ eyes will review your
processes
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PREPARING FOR AN ETHICAL REVIEW
Ethical review is a
requirement of almost all
funders…so how does this
work?
You write a protocol
& submit it to a Review
Board
ETHICAL REVIEW BOARDS
Located in hospitals and universities.
Composed of:
 Researchers
 Ethicists
 Community members
 Privacy officer
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EXERCISE 5: EVALUATING AN ETHICS
REVIEW PROTOCOL
Review the sample ethics review protocol by yourself.
When you have finished, in your same small groups,
discuss the protocol section by section.
Answer the guiding questions for each section.
Be prepared to report back the extent to which the
sample protocol answers the guiding questions.
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EXERCISE 6: Learning into Practice
1. Working in pairs, create a project relevant to
yourselves or your organizations (or feel free to use a
project you are currently working on).
2. Work through an Ethics Review Protocol for this
project.
3. Be prepared to discuss your results with the class!
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TIPS FOR A SUCCESSFUL REVIEW
1.
Start thinking about Ethics from day one.


Identify ethical red flags throughout the design, and
talk them through with your research partners.
Do not leave your application until the last minute.
2. Assume the REB members know nothing.


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Unanswered questions will have to be addressed
during a second round.
Justify and explain your choices (append when
needed).
Be specific, even when you need to remain flexible.
Recognise your expertise, acknowledge your
limitations.
 Review REB protocol guidelines and ask for guidance
when needed!
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LEARNING OBJECTIVES
Upon completion of this workshop you will be able to:
•
Understand the importance of research ethics and “informed
consent”
•
List the fundamental elements of ethical principles
•
Identify and prevent potential ethical issues in CBR
•
Problem solve different ethical issues commonly presented in
CBR
•
Apply the Ethic Review Protocol Using Guiding Questions
•
Describe the ethics review process
21
WORKSHOP EVALUATION
Your feedback is important.
Please complete the workshop evaluation.
Thank you.
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CBR 102
Ethical Issues in Community-Based
Research