title: The social dynamics of consent and refusal in HIV surveillance in rural South Africa.
abstract: In the context of low rates of participation in a prospective, population-based HIV surveillance programme, researchers at a surveillance site in rural KwaZulu-Natal, South Africa, conducted an operational study from January 2009 to February 2010, with the aim of improving participation rates, particularly in the provision of dried blood spots for the surveillance. Findings suggest, firstly, that consent to participation in the HIV surveillance is informed by the dynamics of relationality in the HIV surveillance "consent encounter." Secondly, it emerged that both fieldworkers and participants found it difficult to differentiate between HIV surveillance and HIV testing in the surveillance procedure, and tended to understand and explain giving blood under the aegis of the surveillance as an HIV test. The conflation of surveillance and testing, we argue, is not merely a semantic confusion, but reveals an important tension inherent to global health research between individual risks and benefits and collective good, or between private morality and public good. Because of these structural tensions, we suggest, the HIV surveillance consent encounter activates multiple gift economies in the collection of blood samples. Thinking beyond the complex ethical dimensions provoked by new forms of long-term surveillance and health research, we therefore suggest that deepening relations between scientists, fieldworkers, and study participants in locality deserve more careful methodological consideration and descriptive attention.
authors.affiliation: Department of Anthropology, Johns Hopkins University, 3400 N. Charles St., 404 Macauley Hall, Baltimore, MD 21218, United States. ljreynol@jhsph.edu
authors.forename: Lindsey
authors.initials: L
authors.lastname: Reynolds
authors.forename: Thomas
authors.initials: T
authors.lastname: Cousins
authors.forename: Marie-Louise
authors.initials: ML
authors.lastname: Newell
authors.forename: John
authors.initials: J
authors.lastname: Imrie
mesh_terms: D000293:Adolescent; D000328:Adult; D005260:Female; D015658:HIV Infections / Q000453:epidemiology*; D006302:Health Services Research; D006801:Humans; D007258:Informed Consent / Q000706:statistics & numerical data*; D008297:Male; D008875:Middle Aged; D011159:Population Surveillance / Q000379:methods; D011446:Prospective Studies; D036301:Qualitative Research; D012424:Rural Population / Q000706:statistics & numerical data*; D013019:South Africa / Q000453:epidemiology; D016312:Treatment Refusal / Q000706:statistics & numerical data*; D055815:Young Adult