Abstract
BackgroundComplex biomedical research can lead to disquiet in communities with limited exposure to scientific discussions, leading to rumours or to high drop-out rates. We set out to test an intervention designed to address apprehensions commonly encountered in a community where literacy is uncommon, and where complex biomedical research has been conducted for over a decade. We aimed to determine if it could improve the validity of consent.MethodsData were collected using focus group discussions, key informant interviews and observations. We designed an intervention that exposed participants to a detailed demonstration of laboratory processes. Each group was interviewed twice in a day, before and after exposure to the intervention in order to assess changes in their views.ResultsFactors that motivated people to participate in invasive biomedical research included a desire to stay healthy because of the screening during the recruitment process, regular advice from doctors, free medical services, and trust in the researchers. Inhibiting factors were limited knowledge about samples taken from their bodies during endoscopic procedures, the impact of endoscopy on the function of internal organs, and concerns about the use of biomedical samples. The belief that blood can be used for Satanic practices also created insecurities about drawing of blood samples. Further inhibiting factors included a fear of being labelled as HIV positive if known to consult heath workers repeatedly, and gender inequality. Concerns about the use and storage of blood and tissue samples were overcome by a laboratory exposure intervention.ConclusionSelecting a group of members from target community and engaging them in a laboratory exposure intervention could be a useful tool for enhancing specific aspects of consent for biomedical research. Further work is needed to determine the extent to which improved understanding permeates beyond the immediate group participating in the intervention.
Highlights
Complex biomedical research can lead to disquiet in communities with limited exposure to scientific discussions, leading to rumours or to high drop-out rates
Successful recruitment and retention of subjects in clinical trials contributes to both the statistical power and the credibility of a trial [1]. This can be challenging in clinical trials which involve invasive procedures, those outside the most familiar activities of medical care
Studies have shown that some participants in clinical research are reluctant to take part in such clinical trials because of misconceptions and fears regarding the use of blood samples [2]
Summary
Complex biomedical research can lead to disquiet in communities with limited exposure to scientific discussions, leading to rumours or to high drop-out rates. Studies have shown that some participants in clinical research are reluctant to take part in such clinical trials because of misconceptions and fears regarding the use of blood samples [2] These concerns and misconceptions, which are often grounded within a specific social-cultural context, generate rumours which negatively affect recruitment and increase losses to follow-up [3]. Rumours about blood thefts by ‘Satanists’ contributed to high losses to follow-up in a trial conducted in Zambia on iron and multimicronutrient supplementation. This was as a result of ‘‘belief of the existence of a cult which drinks human blood as part of their rituals, and such collection of blood was generally viewed with much suspicion’’ [6]
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