Research biobanks: A two-faced future

Capocasa, Marco; Dominici, Valentina; Rufo, Fabrizio

doi:10.17159/sajs.2018/5402

S. Afr. J. Sci.

2018

DOI: 10.17159/sajs.2018/5402

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Research biobanks: A two-faced future

Marco Capocasa¹,

Valentina Dominici²,

Fabrizio Rufo³

Abstract: The possibility of preserving human tissue separated from the body, from which to extract clinical information, even on large numbers of individuals with similar clinical conditions, represents a great opportunity for the progress of biomedicine. To date, it is virtually impossible to hypothesise all the future uses of such tissue. However, the decisive role of these biological materials in the understanding and resolution of questions regarding the origin and development of certain genetic diseases is well re… Show more

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2021

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Stakeholder perspectives on the ethico-legal dimensions of biobanking in South Africa

Singh

Moodley

2021

BMC Med Ethics

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Background Biobanking provides exciting opportunities for research on stored biospecimens. However, these opportunities to advance medical science are fraught with challenges including ethical and legal dilemmas. This study was undertaken to establish perspectives of South African stakeholders on the ethico-legal dimensions of biobanking. Methods An in-depth exploratory study was conducted with 25 purposively selected biobankers, clinicians, researchers, postgraduate students in biobanking research, and research ethics committee (REC) members in South Africa. Potential study participants were recruited through known hubs for biobanking in the country, online searches and the snowball sampling technique. A semi-structured face-to-face or Skype interview was arranged. Data was analysed using thematic analysis. Results The emergent themes included: inconsistency in understanding consent models, disconnect between biobank researchers and biosample donors, inadequate processes to support re-consenting minors, inconsistent governance processes for biobanking research; challenges with sample and data sharing, and suboptimal strategies for benefit sharing and return of results. Biobanking practice in general appeared to be inconsistent and fragmented. While the need for consent in research is explicitly outlined in legislative documents, some respondents were unclear on the type of consent model to apply in biosample collection. They also reported inconsistencies in research participants’ understanding of consent. Furthermore, these respondents’ own understanding of consent and consent models were dependent on where they were positioned in biobanking practice (roles occupied). Respondents were unsure about the process to follow to re-consent child participants once the age of majority (≥ 18 years) was reached. It was not surprising that consent was identified as one of the major ethical challenges in biobanking practice. In certain settings, some respondents reported suboptimal governance processes for sample collection. Participants were generally unsure about how to operationalise benefit sharing and how to approach the idea of returning results to research participants and biobank donors. Conclusion The study findings indicated inconsistencies in stakeholder understanding of ethico-legal considerations related to biobanking in South Africa. A need for ongoing ethics capacity development among stakeholders was identified. Improving understanding of the ethics of biobanking could be facilitated by acknowledging the disconnect created by biosamples in the relationship between biobank researchers and donors.

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Stakeholder perspectives on the ethico-legal dimensions of biobanking in South Africa

Singh

Moodley

2021

BMC Med Ethics

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Research biobanks: A two-faced future

Cited by 1 publication

References 13 publications

Stakeholder perspectives on the ethico-legal dimensions of biobanking in South Africa

Stakeholder perspectives on the ethico-legal dimensions of biobanking in South Africa

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