HIVNET HIV Network for Prevention Trials - Community Education & Participation

Community Education

Mission: Community Educators' Group

Community Advisory Boards

Mission: HIVNET National Community Advisory Board

Job Description: National HIVNET CAB Member

CAB Organizational Structure

Principles/Recommendations for Community Education/Community Participation

HIVNET Community Education

The success of HIV prevention studies requires researchers and members of communities at risk for HIV infection to build trust by engaging in open, ongoing discussion. Trust is critical since public confidence in the safety and integrity of medical research can be undercut by the legacy of previous research abuses, such as the Tuskegee Syphilis Study.

Preparing and educating the community about the HIVNET and HIV vaccine trials is a central activity of the HIVNET. Community educators at each site of the HIVNET are helping community members to understand the science of HIV/AIDS and vaccines, as well as the methods of research and clinical trial processes, and responding to the educational needs of the community. These discussions include candid conversations about fears and concerns related to government-sponsored research. Building strong relationships and a sense of trust between the HIVNET researchers and the community is crucial to the success of the HIVNET. If you are interested in talking with one of the HIVNET community educators, contact the community educator at the HIVNET site nearest you. Click here for the research site contact list.

Some Useful Definitions

Tuskegee Syphilis Study - This study of over 400 African American male sharecroppers in the South was conducted by the US Public Health Service from 1932 to 1972. Researchers observed the progression of untreated syphilis in African American men even though treatment was available at the time. Participants were also put into the study without their informed consent. The Tuskegee Syphilis Study is often mentioned as one of the primary reasons why African Americans to this day still fear and distrust medical institutions and the public health system.

Informed Consent - An educational and decision-making process in which people voluntarily agree to participate in a research study. Before participants are enrolled into a study, they must first receive and understand information about what is involved in participating, patient's rights, risks, benefits, complications and side effects.