Human rights and international law expert Professor Hilary Charlesworth, says that Australia's appointment to the UN Human Rights Council gives the country an opportunity to examine its own human rights record.
University of Melbourne School of Population and Global Health ethics researcher Dr Bridget Pratt also wants research funders to ensure their grants programs encourage and support meaningful community engagement.
“Many current funding programs fail to substantially invest in global health research that is responsive to local needs,” Dr Pratt said.
“Their emphasis is on funding research that will help protect donor countries against infectious disease threats from poorer countries.”
Dr Pratt’s framework is the first to list ethical considerations for engaging disadvantaged and marginalised groups when setting priorities in health research.
“Its use can help reduce the likelihood of shallow, tokenistic community engagement in health research priority setting and deliver projects with research topics and questions that more accurately reflect the health needs of disadvantaged and marginalised groups,” she said.
Writing in Developing World Bioethics, Dr Pratt argues that the framework supports researchers and their partners to better represent diversity, mitigate power disparities and promote more inclusive community engagement.
“Disadvantaged and marginalised groups are more likely to be present and heard, which, in turn, will help generate research projects with topics and questions that encompass their health needs,” the paper says.
“Where research is more relevant to these groups, it is much more likely to generate knowledge that will improve public health and health care systems for them,” Dr Pratt said.
Dr Pratt, who is now refining the framework’s content and language based on further research, said it could potentially be applied in research with marginalised communities in high-income countries like Australia and the USA.
In a Bioethics paper with the University of Cape Town’s Associate Professor Jantina de Vries, Dr Pratt developed initial guidance on how to address some of the ethical considerations identified in the framework.
That guidance covers who should be involved, how and for what purpose when engaging communities in global health research. It calls for shared decision-making between researchers and community members, with deliberations structured to minimise power disparities amongst them.
Dr Pratt also produced a Global Public Health paper with Johns Hopkins University’s Professor Adnan A. Hyder that urged research funders to ethically design their grants programs for global health research.
They argue that funders should design grants programs that create incentives for applicants to focus their research on marginalised communities, and involve those communities and low and middle-income country (LMIC) researchers in setting research priorities.
They also say funders and grant programs should create incentives for building a critical mass of LMIC researchers and institutions, and promoting policy and practice changes that benefit marginalised communities.
Dr Pratt said some researchers and funders did a good job but there was room for improvement in others.
“It’s really about doing research that’s actually improving the health of more marginalised groups and increasing their participation in its conduct, and having grants programs that encourage and support such research,” she said.
“In order to do that, you need to go about your funding and research in a particular way and you have to be systematic about it. Social justice has two dimensions. One is around improving the health of marginalised groups and the other is increasing their participation in decision-making in society in general, including in the research system.”