Public Engagement With HIV Science

Kenyon-FarrowMelbourne, Australia: Co-Chairs Judith Auerbach (USA) and Veronica Noseda (France) moderated a panel of distinguished social scientists exploring questions relating to the technological, behavioural, social, political and economic factors associated with individuals’ decisions to participate in HIV prevention and treatment programs.
All of the panellists acknowledged the challenges faced by researchers conducting clinical trials, i.e., experiments on humans.Panel members discussed a range of topics, including the controversies surrounding allegations that some HIV research was exploiting vulnerable populations.

According to KathleenMacQueen (USA), these controversies “can be viewed as an expression of civil engagement in science.” She is among those developing the “Stakeholder Engagement Toolkit for HIV Prevention Trials”. This toolkit is designed to facilitate researchers’ work within the communities in which these clinical trials are operating. A complete copy of this 224-page document can be found at http://www.fhi360.org/sites/default/files/media/documents/Stakeholder%20EngagementToolkit%20for%20HIV%20Prevention%20Trials.pdf

Pedro Goicochea (Peru) discussed his recent study of factors or variables associated with the use of antiretroviral medications (which are used to treat people living with HIV) to prevent HIV acquisition. This is referred to as pre exposure prophylaxis (PrEP). Information or data reportedly was collected from 2,499 participants, using interviews and discussion groups. Goicochea found that among the leading or most important factors motivating people to participate in the clinical trial was receipt of health services. However, he also found that clinical trial participants wanted the treatment to continue after the clinical trial ended – raising the question of accessibility to or availability of post-experiment treatment. Goicochea’s report can be found at http://www.iprexnews.com/content/mediafiles/englishmedia/pdfconferences/aidsimpact/AIDS%20Impact%202011-iPrEx%20A%20Case%20Study%2013SEP11.pdf

Kane Race (Australia) began his presentation by stating that “greater public understanding of science is essential for modern democracy.” He emphasized that public engagement with care is different than public engagement with science. Race also discussed the complexities as a “dynamic heterogeneity”. For additional information on Race’s work, please visit his webpage at http://sydney.edu.au/arts/gender_cultural_studies/staff/profiles/kane.race.php

Kenyon Farrow,U.S. and Global Health Policy Directorof the Treatment Action Group based in New York, was among the session’s attendees posing questions to the panel. During an exclusive interview, Farrow said that among the stakeholders in clinical trials are people living with HIV and people in communities impacted by HIV. He contends that African Americans can be part of the public engagement with HIV science to the extent they are informed about the advancements in HIV science. Farrow recommends that HIV prevention advocates increase their informational activities, including regularly contacting civic groups, youth organizations, and faith based associations located within African American neighborhoods. For additional information on the Treatment Action Group, please visit its website at http://www.treatmentactiongroup.org/
By
Dr. Anne T. Sulton, Esq.
Jackson Advocate Senior International Correspondent
Print and www.jacksonadvocateonline.com