The willingness to participate in biomedical research involving human beings in low‐ and middle‐income countries: a systematic review

The willingness to participate in biomedical research involving human beings in low‐ and middle‐income countries: a systematic review
Joyce L. Browne, Connie O. Rees, Johannes J. M. van Delden, Irene Agyepong, Diederick E. Grobbee, Ama Edwin, Kerstin Klipstein‐Grobusch, Rieke van der Graaf
Tropical Medicine & International Health, March 2019; 24(3) pp. 264-279
Objectives
To systematically review reasons for the willingness to participate in biomedical human subjects research in low‐ and middle‐income countries (LMICs).
Methods
Five databases were systematically searched for articles published between 2000 and 2017 containing the domain of ‘human subjects research’ in ‘LMICs’ and determinant ‘reasons for (non)participation’. Reasons mentioned were extracted, ranked and results narratively described.
Results
Ninety‐four articles were included, 44 qualitative and 50 mixed‐methods studies. Altruism, personal health benefits, access to health care, monetary benefit, knowledge, social support and trust were the most important reasons for participation. Primary reasons for non‐participation were safety concerns, inconvenience, stigmatisation, lack of social support, confidentiality concerns, physical pain, efficacy concerns and distrust. Stigmatisation was a major concern in relation to HIV research. Reasons were similar across different regions, gender, non‐patient or patient participants and real or hypothetical study designs.
Conclusions
Addressing factors that affect (non‐)participation in the planning process and during the conduct of research may enhance voluntary consent to participation and reduce barriers for potential participants.