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Trop Med Int Health. 2018 Dec 18. doi: 10.1111/tmi.13195. [Epub ahead of print]

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

Author information

1
Julius Global Health, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands.
2
Department of Medical Humanities, Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands.
3
Ghana Health Service, Research and Development Division, Accra, Ghana.
4
Public Health Faculty, Ghana College of Physicians and Surgeons, Accra, Ghana.
5
Department of Psychological Medicine and Mental Health, School of Medicine, University of Health and Allied Sciences, Ho, Ghana.
6
Division of Epidemiology & Biostatistics, School of Public Health, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.

Abstract

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.

KEYWORDS:

barriers to participate; health; informed consent; low- and middle-income countries; reasons for non-participation; reasons for participation; willingness to participate

PMID:
30565381
DOI:
10.1111/tmi.13195

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