Abstract:
In research ethics community, the ‘bright line’ between health care and health research continues to be
emphasized as important. While this distinction may be clear for many health researchers and practitioners, it may
not be clear to research participants. In the case of HIV/AIDS care in resource-limited settings where healthcare
is not affordable, individuals and communities are burdened with high rates of infectious diseases, inadequate
health conditions, and insufficient or inaccessible medical care. Under these circumstances people are desperate
to access better healthcare through any possible means. Participating in clinical research may be seen as one
way of accessing care. Even though measures are taken to ensure that participants in health research get into this
activity only after a consenting process, some may enter into research for the purpose of accessing treatment or
health care. The objective of the study was to investigate specific reasons why participants engage in ongoing IREC/
IRB-approved international HIV research in Western Kenya. The main reasons given for participating in research
were contextual: the HIV/AIDS condition, access to better healthcare, and financial poverty were identified. Clinical
researchers indicated that their research projects had provisions for healthcare and better services and facilities
than in the standard healthcare in terms of individual attention and follow up. Study participants in ongoing research
in Western Kenya believe that their participation in HIV/AIDS research enables them to access better healthcare. In
the context of limited resources and HIV/AIDS, patients’ beliefs, extra-medical attention and follow up translate into
better healthcare. These observations suggest that in practice there may not be a bright line between research and
clinical care (no “therapeutic misconception”) and suggest the need for more stringent efforts to make this distinction
clear in processes of informed consent in such settings.
