AEGiS-14IAC: Community, research and ethics: Participatory approaches to assessing HIV and STD burden in urban India.

14th International AIDS Conference

Barcelona, Spain - July 7-12, 2002

Community, research and ethics: Participatory approaches to assessing HIV and STD burden in urban India.

Int Conf AIDS 2002 Jul 7-12; 14:(abstract no. WeOrD1355)

Sivaram S, Srikrishnan AK, Murgavel KG, Balakrishnan K, Mayer KH, Celentano DD, Solomon S, NIMH Collaborative HIV/STD Prevention Trial US
Johns Hopkins University Bloomberg School of Public Health, Baltimore, United States

BACKGROUND: Assessing the burden of HIV and sexually transmitted diseases (STDs) in a community is an key step in any community-based effort to prevent the spread of HIV. However, the challenge is to conduct assessment while protecting the human rights of the participants and providing follow-up care in the event a person is positive with HIV. This paper describes how we addressed this challenge as part of a large multi-site randomized controlled HIV prevention trial in the city of Chennai in south India.

METHODS: We conducted assessment activities in 30 trial communities through health fairs. In these activities, we measured both behavioral and biological risks. Community leaders and volunteers helped organize these camps. Sixty-five adults from each community between the ages of 18 and 40 years were randomly selected from a project census list. We administered informed consent to all selected participants. A week to ten days after the camp, all participants and health camp attendees who provided biological samples were given their test results in a confidential manner. We also facilitated follow-up care and referrals.

RESULTS: Of the 1950 selected respondents, 1839 persons were given health cards to attend the fairs. Of these, 91% of the participants took part in data collection activities. Forty three percent of the participants were men and 56% were women. Of the men, 99% provided biological samples - serum and urine. Of the women, 98% provided serum and 77% provided vaginal swabs. Community participation was facilitated by repeated visits to the community and offering clarifications in the informed consent process.

CONCLUSIONS: Informed consent is a multi-step process and constant interaction with the community before assessment not only achieves higher participation but also increases credibility of the study. These are important precursors to planning the trial and designing the intervention.

Keywords: AEGIS, HIV Infections, Sexually Transmitted Diseases, HIV Seropositivity, Acquired Immunodeficiency Syndrome, Informed Consent, Consumer Participation, Data Collection, Research Design, India, Human, Female, Male, Adult, ethics

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