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

Browne, Joyce L.; Rees, Connie O; Delden, Johannes J. M. van; Agyepong, Irène Akua; Grobbee, Diederick E.; Edwin, Ama Kyerewaa; Klipstein‐Grobusch, Kerstin; Graaf, Rieke van der

doi:10.1111/tmi.13195

Cited by 28 publications

(39 citation statements)

References 111 publications

(544 reference statements)

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“…For many participants, trust in the healthcare providers was a significant element in decision-making about research participation. The role of trust regarding research participation has been observed in multiple settings [16,[27][28][29]. In other contexts, it seems that mistrust is a more important element that needs to be addressed in communities where research takes place [30,31].…”

Section: Discussionmentioning

confidence: 99%

Researcher and study participants’ perspectives of consent in clinical studies in four referral hospitals in Vietnam

Nuil

Nguyen

et al. 2020

BMC Med Ethics

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Background: Within the research community, it is generally accepted that consent processes for research should be culturally appropriate and tailored to the context, yet researchers continue to grapple with what valid consent means within specific stakeholder groups. In this study, we explored the consent practices and attitudes regarding essential information required for the consent process within hospital-based trial communities from four referral hospitals in Vietnam. Methods: We collected surveys from and conducted semi-structured interviews with study physicians, study nurses, ethics committee members, and study participants and family members regarding their experiences of participating in research, their perspectives toward research, and their views about various elements of the consent process. Results: In our findings, we describe three interrelated themes related to the consent process: (1) words and regulation; (2) reimbursement, suspicions, and joining; and (3) responsibilities. In general, stakeholders had highly varied perspectives of nghiên cứu (Eng.: research) and researchers used varying levels of detail regarding all aspects of the study in the consent process to build trust with and/or promote potential research participants' choices about taking part in research. Findings additionally highlight how researchers felt that offering financial reimbursements in a hospital setting, where payment for services was routine, would be unfamiliar to participants and could raise suspicions about the research. Participants, however, focused their discussions on reimbursement or alternative reasons for joining the study, such as health related benefits or altruism. Finally, participants often relied on their physician to help them decide about joining a study or not. Conclusion: Further research is needed to understand how researchers and participants make sense of and practice consent, and how that impacts participants' decision-making about research participation. To promote valid consent within this context, it is important to engage with hospital-based trial communities as a whole. The data from this study will inform future research on consent, guide the revisions of consent related policies within our research sites and point to several larger issues surrounding researcher-participant expectations, communication, and trust.

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Section: Discussionmentioning

confidence: 99%

Researcher and study participants’ perspectives of consent in clinical studies in four referral hospitals in Vietnam

Nuil

Nguyen

et al. 2020

BMC Med Ethics

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“…8 Additionally, sociodemographic factors, including education, income, and religion, may influence participants' decision to provide their consent and to participate in biomedical research. [9][10][11][12] There have been few studies that have evaluated awareness of participants about biomedical research and factors affecting their willingness to participate in biomedical research in the Middle East, 13,14 and none has been conducted within the Jordanian community. Accordingly, the aim of the current study was to assess the knowledge and awareness of public in Jordan about biomedical research and to determine factors associated with their participation in various types of biomedical research studies.…”

Section: Introductionmentioning

confidence: 99%

<p>Factors Influencing Public Knowledge and Willingness to Participate in Biomedical Research in Jordan: A National Survey</p>

Farha¹,

Alzoubi²,

Khabour³

et al. 2020

PPA

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Purpose Recruitment of adequate numbers of research participants is important for advancement in biomedical fields. Awareness and knowledge of the population about biomedical research are expected to enhance willingness to participate in such research. Therefore, in the current study, participants’ awareness, knowledge, and willingness to participate in scientific research in Jordan were examined. Methods This was a survey-based, cross-sectional study conducted from December 2019 to February 2020 among the public in Jordan. After written informed consent had been obtained from study participants, a structured questionnaire was used to survey research participants. The final questionnaire contained three parts: part I was about demographics and general information, part II assessed participants’ awareness and willingness to participate in biomedical research, and part III assessed participants’ knowledge about biomedical research studies. Results A total of 2,000 subjects agreed to participate, of which 67.4% were female (n=1339). More than half the respondents were aware of biomedical research (58.6%), of which 18.1% had previously participated in biomedical research. In addition, 55.5% reported that they were willing to participate in biomedical research, while a lower proportion (31.1%) were willing to volunteer in a clinical trial. The overall knowledge of participants about biomedical research was deemed moderate (total score 12.9 out of 20). Finally, willingness to participate in biomedical research was associated with being male, being married, having a biomedicine-related degree, and higher knowledge score. Conclusion A majority of Jordanians had moderate levels of awareness and knowledge about biomedical research. Such factors as sex, type of education, and knowledge contribute to willingness to participate in biomedical research.

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“…This cascade can reduce willingness to participate in research, and undermine trust in biomedical science. It also falls below recommended standards for participant research (Barrett et al, 2020;Browne et al, 2019).…”

Section: Introductionmentioning

confidence: 89%

Ethical Reflections on the Conduct of HIV Research with Community Members: A Case Study

Brown

Taylor

Dubé

et al. 2020

Journal of Empirical Research on Human Research Ethics

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Some researchers continue to engage in “helicopter” or “parachute” research and do not ethically engage or collaborate with communities from which data are collected. This paper uses a case study to discuss the ethical issues arising from these research practices and the importance of increasing meaningful community involvement in research. Set in the context of research among older people living with HIV, the case study is followed by the perspectives of four research stakeholders. Through these perspectives, this paper demonstrates the ethical perils and harms that stem from research practices exemplified in the case. We argue instead for researchers to practice participatory research methods in line with community-based participatory research approaches (CBPR), good participatory practices (GPP), the Denver Principles, and CIOMS guidelines. Towards this end, we describe tools developed in collaboration with stakeholders in the research process to help researchers incorporate community participation and reduce unethical research conduct.

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

Cited by 28 publications

References 111 publications

Researcher and study participants’ perspectives of consent in clinical studies in four referral hospitals in Vietnam

Researcher and study participants’ perspectives of consent in clinical studies in four referral hospitals in Vietnam

<p>Factors Influencing Public Knowledge and Willingness to Participate in Biomedical Research in Jordan: A National Survey</p>

Ethical Reflections on the Conduct of HIV Research with Community Members: A Case Study

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