Allegations of misuse of African DNA in the UK: Will data protection legislation in South Africa be sufficient to prevent a recurrence?

Moodley, Keymanthri; Kleinsmidt, Anita

doi:10.1111/dewb.12277

Cited by 28 publications

(28 citation statements)

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“…The Sanger case highlighted earlier, is one such example of the consequences of lapses in ethical oversight. In particular, the Sanger case [ 7 , 10 , 11 ]. Illustrates the complexities in biobanking efforts even when data protection measures are in place.…”

Section: Discussionmentioning

confidence: 99%

“…17.2 that ‘neither party may assign or cede any benefit, obligation or interest it may have in this agreement to any other person without the prior written consent of the other party and the approval of the HREC’ [ 23 ], research ethics guidance documents are not explicit about commercialisation. The fact that commercialization of biospecimens (involving researchers) was not highlighted as a prominent ethical concern in this study, is problematic in light of the legislative loopholes with respect to material transfer in South Africa and the recent case of the alleged misuse of South African data and samples by the Wellcome Sanger Institute in the UK [ 7 , 10 , 11 ]. This incident has highlighted the global challenges with the governance of data and sample sharing when this occurs in the absence of respect for research participants, research collaborators and collaborating institutions [ 8 ].…”

Section: Discussionmentioning

confidence: 99%

“…The contention arose when the samples were allegedly further shared by the Wellcome Sanger Institute with a third party for the creation of gene chips (also known as ‘microarrays’ for rapid genetic testing) but without the original South African university’s knowledge nor with consent from research participants. Additionally, the South African university claimed that there was no data sharing agreement with this third party and demanded the return of the shared samples from the Wellcome Sanger Institute [ 7 , 10 , 11 ].…”

Section: Introductionmentioning

confidence: 99%

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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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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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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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“…In 1993, the World Congress of Indigenous Peoples labeled the Human Genome Diversity Project "the Vampire Project," saying that it was more interested in collecting blood from indigenous peoples than in their well-being (39). More recently, the Sanger Institute was accused of misusing South African DNA samples in order to commercialize a research tool based on the material, a violation of agreements with African scientists who had collected the sequences (99). Researchers at Arizona State University gathered blood samples from the Havasupai tribe to search for a link to diabetes, then also used the samples to look for other diseases and genetic markers, thereby violating the basic tenets of human subjects research and underlying principles of informed consent (35).…”

Section: Global and Population-based Surveys Of Genomic Diversitymentioning

confidence: 99%

The Need for a Human Pangenome Reference Sequence

Miga

Wang²

2021

Annu. Rev. Genom. Hum. Genet.

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The reference human genome sequence is inarguably the most important and widely used resource in the fields of human genetics and genomics. It has transformed the conduct of biomedical sciences and brought invaluable benefits to the understanding and improvement of human health. However, the commonly used reference sequence has profound limitations, because across much of its span, it represents the sequence of just one human haplotype. This single, monoploid reference structure presents a critical barrier to representing the broad genomic diversity in the human population. In this review, we discuss the modernization of the reference human genome sequence to a more complete reference of human genomic diversity, known as a human pangenome. Expected final online publication date for the Annual Review of Genomics and Human Genetics, Volume 22 is August 2021. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

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“…In 2019, the South African Medical Research Council (SAMRC), in partnership with the BGI, launched the first high throughput WGS platform in South Africa. The local availability of WGS makes exporting of samples unnecessary, thereby preventing the misuse of South African genetic material 12 , and expedites human genetic research in one of the most diverse countries in the world. Additionally, it allows researchers in South Africa to produce and analyse African genomics data on African soil, at an affordable price.…”

Section: Introductionmentioning

confidence: 99%

Human whole genome sequencing in South Africa

Glanzmann

Jooste

Ghoor

et al. 2021

Sci Rep

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The advent and evolution of next generation sequencing has considerably impacted genomic research. Until recently, South African researchers were unable to access affordable platforms capable of human whole genome sequencing locally and DNA samples had to be exported. Here we report the whole genome sequences of the first six human DNA samples sequenced and analysed at the South African Medical Research Council’s Genomics Centre. We demonstrate that the data obtained is of high quality, with an average sequencing depth of 36.41, and that the output is comparable to data generated internationally on a similar platform. The Genomics Centre creates an environment where African researchers are able to access world class facilities, increasing local capacity to sequence whole genomes as well as store and analyse the data.

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Allegations of misuse of African DNA in the UK: Will data protection legislation in South Africa be sufficient to prevent a recurrence?

Cited by 28 publications

References 0 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

The Need for a Human Pangenome Reference Sequence

Human whole genome sequencing in South Africa

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