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When HIV clinicians prevent social scientists from accessing 'their' patients : some ethical concerns

Year: 2006
Author: Nattrass, Nicoli
Unit: ASRU
Journal: Southern African Journal of HIV Medicine
Volume: 22
Pages: 16-18
Abstract:

There is an understandable tension between medical researchers and social scientists when it comes to AIDS-related research at clinic level. Clinics offering antiretroviral treatment exist primarily to assist patients – but many of them also provide 'data' for medical researchers. This may involve a randomised controlled trial, or simply the collection of data on adherence. A social scientist wishing to access patients to conduct interviews or focus groups thus (inevitably) appears to the HIV clinician as at best a disruption to an already over-stretched operation, and at worst a potentially confounding factor in his or her own research.

Given that the medical practitioner/researchers effectively control the clinics, the temptation to deny social scientists access to patients must be strong. As discussed below, this was the case with regard to two Cape Town clinics that prevented a clinical psychologist (working in my research unit) from conducting social science research. Although understandable, such unaccountable exercise of power denies patients the opportunity to participate in other research projects that may be of benefit to them (or society) in ways that HIV clinicians do not necessarily appreciate. As such, it violates the principle of informed consent. It is also problematic in that it restricts the AIDS research agenda to biomedical concerns. This is particularly worrying with regard to AIDS, where it is widely accepted (by social scientists and HIV clinicians alike) that social and psychological factors matter a great deal for HIV prevention and treatment interventions.


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