Department of Medicine, Centre for Medical Ethics and Law, Faculty of Health Sciences, Stellenbosch University, Tygerberg, Cape Town, South Africa.
Department of Social Medicine, Center for Bioethics, University of North Carolina, Chapel Hill, North Carolina, USA.
Biopreserv Biobank. 2023 Feb;21(1):81-89. doi: 10.1089/bio.2021.0149. Epub 2022 Jun 27.
Biobanking practice continues to proliferate in South Africa, yet little is known about how stakeholders engage with social, cultural, and religious considerations in this area of research. This study was undertaken to establish the perspectives of South African stakeholders (researchers, biobankers, clinicians, and research committee members) on sociocultural considerations in biobanking research. This in-depth exploratory study used semistructured face-to-face or Skype interviews with 25 purposively selected stakeholders involved in the biobanking-related practice. The study sample comprised biobankers, clinicians, researchers, postgraduate students in biobanking research, and research ethics committee members in South Africa. The interview focused on social and cultural challenges facing the biobanking practice in the country. Further probes included stakeholder perspectives on ownership and custodianship of stored biosamples. Thematic analysis was used to analyze the collected data. Several themes arose from the data analysis. These included respondents' perceptions of poor understanding of biobanking among research participants and communities; inconsistency in defining ownership and custodianship of biosamples; variability in respondents' understanding of cultural, religious, and social implications of biobanking; the notion of distrust; and building trust in biobanking. There were also inconsistencies in respondents' recognition of social, cultural, and/or religious influences on participant decision-making in biobanking research. Respondents highlighted that a general climate of distrust existed in the biobanking practice in South Africa. There is a need for greater stakeholder awareness of sociocultural considerations in biobanking practice in South Africa. One possible way to achieve this could be through the availability of training programs aimed at improving stakeholder understanding of the sociocultural context for biobanking practice in addition to greater efforts at community engagement with respect to all biobanking activities and research.
南非的生物库实践仍在不断增加，但对于利益相关者如何参与该研究领域的社会、文化和宗教问题知之甚少。本研究旨在了解南非利益相关者（研究人员、生物库人员、临床医生和研究委员会成员）对生物库研究中社会文化因素的看法。这项深入的探索性研究采用半结构化的面对面或 Skype 访谈方式，对 25 名参与生物库相关实践的有目的选择的利益相关者进行了访谈。研究样本包括生物库人员、临床医生、研究人员、生物库研究的研究生以及南非的研究伦理委员会成员。访谈重点关注该国生物库实践面临的社会和文化挑战。进一步的探究包括利益相关者对存储生物样本的所有权和保管权的看法。采用主题分析对收集的数据进行分析。 数据分析产生了几个主题。这些主题包括受访者对研究参与者和社区对生物库的理解程度低的看法；对生物样本的所有权和保管权的定义不一致；受访者对生物库的文化、宗教和社会影响的理解存在差异；不信任的观念；以及在生物库中建立信任。受访者对社会、文化和/或宗教对生物库研究中参与者决策的影响的认识也不一致。受访者强调，南非生物库实践中存在普遍的不信任气氛。 南非需要提高利益相关者对生物库实践中社会文化因素的认识。一种可能的方法是提供培训计划，旨在提高利益相关者对生物库实践的社会文化背景的理解，此外还需要加强社区参与，以开展所有生物库活动和研究。
