Why do people refuse to take part in biomedical research studies? Evidence from a resource-poor area

Abstract

Participants' refusal to take part in research is an unpleasant experience that investigators face.. This paper highlights some of the reasons why people from resource-poor settings refuse to take part in health research. This paper also highlights standards which investigators can adopt to avoid unnecessary refusals and at the same time ensure that individuals have the right to participate and freedom to refuse. Our objective was to explore reasons why people refuse to join research studies. We conducted focus group discussions with people who had refused to take part in a number of biomedical research studies but agreed to be interviewed in this study. The study was undertaken in the peri-urban and urban areas of Blantyre district; Bangwe, Mpemba and Madziabango. We found nine key factors that influence people to refuse to participate in biomedical research. The factors are failure to follow traditional customs , lack of study benefits, superstition, poor informed consent procedures, ignorance of health research, fear of strangers, lack of cultural sensitivity, poor timing, and previous bad research experience. People refuse to participate in health research for a number of reasons which can be overcome if researchers embark on community engagement before implementing their studies.

To What did They Consent? Understanding Consent Among Low Literacy Participants in a Microbicide Feasibility Study in Mazabuka, Zambia

“…The issues around consent can be very broad depending on what the issue is that someone needs to give consent to and the process of obtaining consent can further be influenced by various factors including culture, norms, values, traditions, beliefs and practices . In the Zambian context, for example, when one consents to getting married, it often involves more than just the two intending to get married.…”

Tailoring Information Provision and Consent Processes to Research Contexts: The Value of Rapid Assessments

“…Topics examined include comprehension of study information and factors affecting comprehension (Bhansali et al, 2009; Kaewpoonsri et al, 2006; Kass, Maman, & Atkinson, 2005; Krosin et al, 2006; Manafa, Lindegger, & Ijsselmuiden, 2007; Marshall, 2006; Mathews et al, 2005; Minnies et al, 2008; Moodley, Pather, & Myer, 2005; Oduro et al, 2008; Pace, Emanuel et al, 2005; Pace, Talisuna et al, 2005), effects of interventions to improve comprehension (Joseph et al, 2006; Penn & Evans, 2010; Sarkar et al, 2010; Vallely et al, 2010), means of evaluating comprehension (Lindegger et al, 2006; S. Molyneux et al, 2007), voluntariness of participation and factors affecting voluntariness (Kass et al, 2005; Marshall, 2006; Nalugoda et al, 2009; Pace, Emanuel et al, 2005; Pace, Talisuna et al, 2005; Woodsong & Karim, 2005), motivations for consenting or declining to take part in research (Kass et al, 2005; Masiye et al, 2008; Mfutso-Bengo, Masiye et al, 2008; Mfutso-Bengo, Ndebele et al, 2008; Mtunthama et al, 2008; Nabulsi, Khalil, & Makhoul, 2010), decision-making processes and the involvement of others in such processes (Masiye et al, 2008; C. S. Molyneux et al, 2005; Tindana, Kass, & Akweongo, 2006; Woodsong & Karim, 2005), participants’ and communities’ understandings and views of research (Fairhead, Leach, & Small, 2006a, 2006b; Geissler et al, 2008; Gikonyo et al, 2008; Hill et al, 2008; C.…”

Six dimensions of research trial acceptability: how much, what, when, in what circumstances, to whom and why?

“…Discussions about the acceptability of research to invited participants often lack explicit definitions (Feeley et al, 2009). Some analyses equate acceptance with participation, contrasting this with refusal to participate, as in "deciding whether to accept or decline the research" (Mfutso-Bengo et al, 2008, p.…”

“…In relation to what people find acceptable, several benefits and disadvantages perceived by invited participants for this vaccine trial are reported for other research, including appreciation of access to health care or material compensation, and concerns around blood samples (Fisher et al, 2011;Mfutso-Bengo et al, 2008, 2015Masiye et al, 2008). Those invited to enrol weigh up these perceived benefits and risks (Fairhead et al, 2004;Fisher et al, 2011).…”