Human Genetics and Genomics in South Africa: Ethical, Legal and Social Implications

doi:10.17159/assaf.2018/0033

Cited by 14 publications

(11 citation statements)

References 91 publications

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“…Benefit sharing can provide a solution to this dilemma. If genetic data are used to generate healthcare-related benefits, fair distribution of these benefits should be carried out, and these benefits should reach the community which had supplied the genetic material used to generate data resulting in these benefits [38].…”

Section: Perception and Attitudes Regarding Privacy Access And Sharmentioning

confidence: 99%

Knowledge, perceptions and attitude of Egyptian physicians towards biobanking issues

et al. 2021

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Objectives Collection and storage of biospecimens and data for biobanking raise many ethical concerns. Stakeholders’ opinions about these ethical issues are important since they can help in the development of ethical guidelines to govern biobanking activities. Physicians are among the important stakeholders since they contact potential participants and could be biobank users. The goal of this study is to evaluate the perceptions and attitude of Egyptian physicians towards ethical issues in biobanking. Methods A cross-sectional online survey was designed and distributed with the target group between November 2019 and January 2020. Results The questionnaire was completed by 223 physicians. While 65.5% reported hearing the term "Biobanking" before, 45.7% knew that there are biobanks in Egypt. Participants had a general positive attitude towards the value of biobanks in research. About 73% agreed that biobanks can share biospecimens with international research organizations, but only 42.6% supported collaboration with pharmaceutical companies, and 44% agreed to the use of user fees by biobanks. About 48% supported the use of broad consent in biobanks, and 73.1% believed that donors of biospecimens should be informed about results of research performed on their biospecimens. Conclusion Although many Egyptian physicians heard about biobanking, they had limited knowledge about the existence of biobanks in Egypt. They had concerns about commercialization, use of broad consent and user fees. A knowledge gap exists among these stakeholders, which should be covered by different educational activities. Community discussions should start to reach consensus about the issues of commercialization and return of research results.

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Section: Perception and Attitudes Regarding Privacy Access And Sharmentioning

confidence: 99%

Knowledge, perceptions and attitude of Egyptian physicians towards biobanking issues

et al. 2021

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“…This would entail that the state hold personal genomic sequence data in trust for the benefit of its subjects and regulate its use accordingly. This possibility has featured in recent policy proposals ( ASSAf and DST, 2018 ; Draft National Data and Cloud Policy GN 306 of GG 44389, 2021 ).…”

Section: Analysis Of the Various Legal Dimensionsmentioning

confidence: 99%

“…The term “custodian” is often used in the literature on genomic data governance (see, e.g., ASSAf and DST, 2018 ; Ramsay, 2022 ; Verlinden et al, 2016 ; Shah et al, 2019 ; Murtagh et al, 2018 ; Marelli et al, 2021 ; Suver et al, 2020 ). Thus, it is important to consider what this term means in relation to property.…”

Section: Introductionmentioning

confidence: 99%

The multidimensional legal nature of personal genomic sequence data: A South African perspective

et al. 2022

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This article provides a comprehensive analysis of the various dimensions in South African law applicable to personal genomic sequence data. This analysis includes property rights, personality rights, and intellectual property rights. Importantly, the under-investigated question of whether personal genomic sequence data are capable of being owned is investigated and answered affirmatively. In addition to being susceptible of ownership, personal genomic sequence data are also the object of data subjects’ personality rights, and can also be the object of intellectual property rights: whether on their own qua trade secret or as part of a patented invention or copyrighted dataset. It is shown that personality rights constrain ownership rights, while the exploitation of intellectual property rights is constrained by both personality rights and ownership rights. All of these rights applicable to personal genomic sequence data should be acknowledged and harmonized for such data to be used effectively.

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“…Recently, the Academy of Science of South Africa (ASSAf) published a report 1 entitled Human Genetics and Genomics in South Africa: Ethical, Legal and Social Implications. The objective of this report was to inform the genetics and genomics regulatory environment in South Africa.…”

Section: Publishedmentioning

confidence: 99%

An optimistic vision for biosciences in South Africa: A response to the ASSAf report on human genetics and genomics

Thaldar¹,

Kinderlerer²,

Soni³

2019

S. Afr. J. Sci.

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Human Genetics and Genomics in South Africa: Ethical, Legal and Social Implications

Cited by 14 publications

References 91 publications

Knowledge, perceptions and attitude of Egyptian physicians towards biobanking issues

Knowledge, perceptions and attitude of Egyptian physicians towards biobanking issues

The multidimensional legal nature of personal genomic sequence data: A South African perspective

An optimistic vision for biosciences in South Africa: A response to the ASSAf report on human genetics and genomics

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