W O R K S H O P H O S T E D B Y :

F A C I L I T A T O R S :

T H E R O N K R A M E R

A Y E S H A U M M E - J I H A D

DO NO HARM: The Ethical Challenges Of

Community-based Research

CONTEXT

Tri-Council agencies: SSHRC, NSERC, CIHR

TCPS 2 mandate: Ethical review is required for human subjects research.

Community-based research does not have access to ethical support or review.

HISTORY of CREO

Needs identified:

1. Access to consultation service for support and education pertaining to CBR

2. A formal review process for CBR projects

3. Training and workshops for CBR and ethics

4. Online resources

CREO, established in 2011, “aims to strengthen and support community research by responding to the needs of community researchers to easily access an ethical support and review process.”

CREO’s STRUCTURE

Community Research Ethics Board consists of:

8 Board of Directors

1 Coordinator

Key considerations in BoD composition

Multidisciplinary

Gender and cultural diversity

Expertise in methodology & ethical considerations of CBR

Expertise in ethics & law

Community research experience as researcher or participant

CREO’s PRINCIPLES

Aligned with the principles of the Tri-Council agencies and the TCPS 2

Adds 4th principle reflecting the impact research has on communities as well as individuals

1. Respect for Persons

2. Concern for Welfare

3. Concern for Justice

4. Respect for Community

CREO’s SERVICES

Ethics reviews

Consultations

Education

Community research ethics network

ETHICS IN THE CONTEXT OF COMMUNITY BASED RESEARCH

COMMUNITY-BASED RESEARCH

Involves the community at all research stages

Usually involves desire for action toward change

May relate to existing services/programs or operations

Results ownership shared between researchers and the community

ETHICAL CHALLENGES

Researchers may not be cognizant of ethical considerations:

Voluntariness – Undue influence

Confidentiality – Use of Focus Groups

Informed consent – how much is too much

Consideration of effects on communities not just on individuals

SOME OF OUR ETHICAL DILEMMAS

Uniqueness of qualitative research

Poor methodology may have ethical implications

Considering treatment of researchers as well as research participants in participatory action research model

Lack of research ethics training for community based researchers

YOUR ETHICAL DILEMMAS

WHAT ETHICAL DILEMMAS/ CONCERNS

HAVE YOU FACED

or

ARE YOU FACING IN

YOUR RESEARCH PROJECTS

??????????

W O R K S H O P H O S T E D B Y :

F A C I L I T A T O R S :

T H E R O N K R A M E R

A Y E S H A U M M E - J I H A D

Thank you for attending!