Have you ever wondered what it means when a research project has the approval of a Human Research Ethics Committee?Heath Paynter
by Dr Jeanne Ellard | Senior Advisor: Research, Australian Federation of AIDS Organisations
In brief, it means an independent committee has reviewed the project and considered whether it has scientific merit, respects the autonomy of the participants and has adequately considered the potential risks and benefits for participants and the wider community.
In Australia, the ethical conduct of research is framed by the National Health and Medical Research Council (NHMRC) National Statement on Ethical Conduct in Human Research which includes values and principles to promote ‘ethically good’ research:
These values and principles are not intended to act as a checklist but rather as a code of practice or “an ethos that should permeate the way those engaged in human research approach all that they do in their research.”
There are particular ethical issues that arise in relation to HIV research particularly as it often involves the collection of sensitive information about sexual practices, illicit drug use and the experiences of living with a chronic and stigmatised illness. However, the values and principles set out in the National Statement aim to be relevant to all forms of research involving humans.
Typically, the NHMRC does not provide separate or additional guidelines for research involving specific populations, communities, diseases or health issues, with a few notable exceptions including research involving Aboriginal and Torres Strait Islander people and Assisted Reproduction. While the values and principles outlined in the National Statement cover all human research, they are not intended to be used in ways that ignore difference. Rather they are designed to be able to encompass a diversity of research methods, populations and disease areas, including research about HIV and with populations most affected by it.
Human research ethics Committees have an important role to safeguard HIV affected communities from being over researched or being asked to participate in research with limited scientific merit. Over time, many HRECs have become more aware of the need for ‘ethically good’ research to be developed in consultation with consumers and communities. HRECs will often now expect research teams to provide evidence of support for a project from community representation, for example support letters, community representation on project reference groups or the inclusion of community partners as investigators or partners on the project.
Currently, two AIDS Councils, Thorne Harbor Health (THH) and ACON, have their own research ethics committees. These are not NHMRC registered HRECs and therefore cannot provide formal approval and oversight for projects they review, but they do play an important role in educating researchers and, indirectly, institutional HRECs to ensure the projects they endorse are ‘ethically good’. For example, ACON has developed a set of sexuality and gender indicators, which are increasingly being adopted in HIV and LGBTI research in Australia resulting in more robust measures of sexuality and gender. AIDS Councils have significant credibility with HIV affected communities and therefore their endorsement signals to these communities that the research has merit and that participation is unlikely to result in individual or community harm.
The HIV community sector plays a vital role in educating researchers and, via these researchers, institutional HRECs about how to interpret ‘ethically good’ research practice in the field of HIV.