This resource provides background information on Canadian research ethics standards in relation to HIV- and hepatitis C-specific research. If you work for a community-based organization and/or are involved with academic research partners, these organizations or institutions will also have their own guidelines around research ethics that you will have to take into consideration.
The general principles for ethical conduct in research are outlined in the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (2014). The Tri-Council policy does not make direct reference to community based research, but it identifies common standards that form a useful guide for the ethical evaluation of research. The main principles are:
- 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 harm
- Maximizing benefit
Additionally, UNAIDS identifies HIV-related “ethical principles that should guide the international, national, community and individual response to HIV/AIDS.” The application of these principles should also be considered for the purposes of ethical conduct in research:
- Equity/Distributive justice
- Respect for persons
- Obligation to treat
- Informed consent
There is a principle referred to as GIPA (the greater involvement of people living with or affected by HIV), MEPA (meaningful engagement of people living with HIV), and the Nothing About Us, Without Us principles that are the backbone of HIV/AIDS, hepatitis C and related policy, research and interventions worldwide. The UNAIDS GIPA Policy Brief, which has evolved into MEPA, is a principle that aims to realize the rights and responsibilities of people living with HIV, including their right to self-determination and participation in decision-making processes that affect their lives. In these efforts, GIPA also aims to enhance the quality and effectiveness of the AIDS response.
The idea that the personal experiences of people living with HIV could and should be translated into helping to shape a response to the AIDS epidemic was first voiced in 1983 at a national AIDS conference in the USA. It was formally adopted as a principle at the Paris AIDS Summit in 1994, where 42 countries declared the Greater Involvement of People Living with HIV and AIDS (GIPA) to be critical to ethical and effective national responses to the epidemic.
OCAP principles are also important when considering the ethics of research with Aboriginal communities and these principles could be examined alongside GIPA principles when thinking about how to do ethical research with people at risk of or who have HIV/AIDS.
The principles of ownership, control, access and possession (OCAP) crystallize themes long advocated by First Nations in Canada. Coined by the Steering Committee of the First Nations Regional Longitudinal Health Survey, the principles are discussed as an expression of self-determination in research.
The Components of OCAP:
- Ownership: Ownership refers to the relationship of First Nations to their cultural knowledge, data, and information. This principle states that a community or group owns information collectively in the same way that an individual owns his or her personal information.
- Control: The principle of control affirms that First Nations, their communities and representative bodies are within their rights in seeking to control over all aspects of research and information management processes that impact them. First Nations control of research can include all stages of a particular research project-from start to finish. The principle extends to the control of resources and review processes, the planning process, management of the information and so on.
- Access: First Nations must have access to information and data about themselves and their communities, regardless of where it is currently held. The principle also refers to the right of First Nations communities and organizations to manage and make decisions regarding access to their collective information. This may be achieved, in practice, through standardized, formal protocols.
- Possession: While ownership identifies the relationship between a people and their information in principle, possession or stewardship is more concrete. It refers to the physical control of data. Possession is a mechanism by which ownership can be asserted and protected.
It is also important to consider the Principles of Ethical Métis Research
HIV and Ethics is a great resource developed by a number of Canadian HIV community-based researchers led by Sarah Flicker and Robb Travers. This online resource includes a number of fact sheets such as: Informed consent; supporting PRAs; ethical issues relating to compensation.
Excellent resources on research ethics and First Nations communities are available on the website of the First Nations Information Governance Centre.
Check out the Universities Without Walls – Ethics Review eLearning Module
Community-based participatory research: A guide to ethical principles and practice by the Centre for Social Justice and Community Action, Durham University and the National Co-Coordinating Centre for Public Engagement