Dear Advocate,
A new report, Moral Science: Protecting Participants in Human Subjects Research, issued by the US government under the Obama Administration reviews necessary protections for individuals participating in clinical research and includes a recommendation for community engagement based on the Good Participatory Practice (GPP) Guidelines for biomedical HIV prevention trials, a document jointly developed by AVAC and UNAIDS.
AVAC is proud to have helped develop the GPP guidelines and is pleased that it is being recognized as having relevance beyond biomedical HIV prevention trials.
The Commission for the Study of Bioethical Issues was established in 2009 by US President Barack Obama to “assure the President that current rules for research participants protect people from harm or unethical treatment, domestically as well as internationally.” The panel conducted a thorough historical review of past unethical research, such as syphilis experiments conducted in Guatemala in the 1940s by US government-funded researchers. The findings from this review were published in September 2011.
Last week, the Commission published Moral Science, which is meant to improve protections of participants in human subjects research in the future. This report included 14 specific recommendations for altering current practices to better protect research subjects. It calls on the federal government to improve its tracking of research programs supported by the US government. The importance of community engagement and the utility of the GPP guidelines are recognized in Recommendation 9: Promote Community Engagement.
The recommendation on community engagement is particularly exciting because, traditionally, community engagement in research has not been subject to systematic guidance, evaluation and review. In the absence of a framework for conducting and evaluating community engagement, research entities may take different approaches and/or may struggle to obtain funding for desired activities. Acknowledging the GPP guidance as a foundational document for community engagement for US-funded research is one important way that these guidelines can gain traction worldwide.
AVAC is working with a number of partners to introduce GPP at research sites, to government entities and community groups. Our partners include UNAIDS, the International AIDS Vaccine Initiative, the Microbicide Trials Network, the Thai NGO Coalition on AIDS, the Wits Reproductive Health and HIV Institute of South Africa and many others.
As we included in AVAC Report 2011 and our new Playbook 2012, increasing the uptake and use of the GPP guidelines is a top priority for AVAC in the New Year. AVAC just conducted its first GPP “training of trainers” in November, and we look forward to working with the growing number of interested parties in expanding this effort. If you want more information about GPP, please email gpp@avac.org.
Please join us as we celebrate a significant achievement for ensuring the community’s voice in research! And as always, please contact us with thoughts or questions.
Best,
AVAC
