Why Research Ethics Matter in International Settings: The Example of HIV/AIDS Research from

a Canadian Perspective

Authors: Jacqueline Gahagan, PhDEllen Sweeney, MA

Catherine Worthington, PhDErin Rogers, MA

Franziska Satzinger, MADarryl Perry

Canadian Association for HIV Research (CAHR)

• The Canadian Association for HIV Research (CAHR) is one of the primary organizations for advancing excellence in HIV/AIDS research both in Canada and internationally.

• CAHR recognizes that research ethics principles and guidelines are crucial to the conduct of high quality and ethically sound HIV/AIDS research.

ISSUES

• Ethics issues within international HIV/AIDS research arose at the International Institute on Gender and HIV/AIDS (IIGHA) in Johannesburg, South Africa in 2004.

• The goal of the IIGHA was to strengthen the connections between practice, policy and research in order to enhance or extend existing efforts to address gender based inequalities fuelling the HIV/AIDS pandemic in Southern Africa.

ISSUES

• A critical issue that arose from the IIGHA was the need to ensure appropriate, ethically sound research is undertaken in resource-limited settings.

• In consultation with Canadian and international experts from research, policy, government, and community and civil organizations, CAHR developed Ethics Issues for Canadian HIV/AIDS Researchers in International Settings.

• The final document provides a reference tool to support HIV/AIDS researchers in identifying and preparing for the unique ethical issues and challenges they may face in conducting HIV/AIDS research in international settings.

ISSUES

• Ethics Issues for Canadian HIV/AIDS Researchers in International Settings incorporates the ethical principles and guidelines of the Canadian Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS).

• Offers a practical tool for researchers and addresses all four of CAHR’s research tracks including basic science, clinical science, public health and epidemiology, and social science.

ISSUES

• Highlights important structural, cultural, political, social, and economic factors that may influence international HIV/AIDS research.

• Examines the unique nature of international HIV/AIDS research which is contextualized by: 1) stigma and culturally-embedded conceptualizations of HIV/AIDS; 2) local and global politics and economics; 3) gender inequalities, power dynamics and sexual roles; and 4) allocation and availability of resources for research and health services.

RESEARCH ETHICS

• Regardless of disciplinary approach or epistemological perspective, we are guided by and held to the same key ethical principles in our research (e.g. respect for human dignity, free and informed consent).

• Despite these shared elements, it has been noted that the TCPS does not adequately address the uniqueness of social science research, particularly within international HIV/AIDS social research.

RESEARCH ETHICS & HIV/AIDS RESEARCH: Example

• In the case of social science research in resource-limited settings where HIV/AIDS is endemic, it can be argued that issues such as free and informed consent may be less clear; gender norms may hinder participation; and participation in HIV/AIDS research itself may raise expectations for a cure.

KEY QUESTIONS FOR CONSIDERATION

1. What role do we as Canadian researchers have to play in ensuring international HIV/AIDS research does not further the burden of disease in resource-limited settings?

KEY QUESTIONS FOR CONSIDERATION

2. How can we provide ethics capacity building opportunities for new and emerging researchers interested in the field of international HIV/AIDS research?

KEY QUESTIONS FOR CONSIDERATION

3. How can we ensure sufficient capacity among Research Ethics Boards (REBs) in Canada to fully appreciate the uniqueness of HIV/AIDS research, including but not limited to community-based research, in international settings?

NEXT STEPS

• It is hoped that Ethics Issues for Canadian HIV/AIDS Researchers in International Settings will provide guidance learned from Canadian experience for those who work towards a meaningful contribution to the struggle against HIV/AIDS through high quality and ethically sound research.

• Ethics Issues for Canadian HIV/AIDS Researchers in International Settings is a living document which will shift over time with the pressing research ethics issues associated with this pandemic.

Knowledge Translation & Exchange

• Official release at the Canadian Association for HIV Research (CAHR) annual conference in Montreal.

• Poster presentation & satellite at the XVII International AIDS Conference in Mexico in August 2008.

• Translation of the document into French and Spanish is underway.

• English version available at: http://ethics.cahr-acrv.ca/

ACKNOWLEDGEMENTS

• This resource was prepared in part based on financial support from the Canadian Association for HIV Research (CAHR) and the Canadian Institutes for Health Research (CIHR).

FOR FURTHER INFORMATION, PLEASE CONTACT

Jacqueline Gahagan, PhD

Associate Professor – Health Promotion

School of Health and Human Performance

Dalhousie University

Phone: (902) 494-1155

Email: jacqueline.gahagan@dal.ca

Website: http://ethics.cahr-acrv.ca/