Bonginkosi Shozi

All Publications

• An imbalanced approach to governance? An analysis of the WHO's position on human genome editing BIOETHICS Thaldar, D., Shozi, B. 2023; 37 (7): 656-661

  Abstract

  In 2021, the WHO Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing (the 'Committee') published its policy recommendations. It proposes, inter alia, a set of nine values and principles to inform the governance of human genome editing (HGE) and makes recommendations regarding how HGE can be regulated. While these proposals contain valuable contributions to the discourse on the global governance of HGE, they also contain elements that call for heightened attention to the risks of the technology, and a countervailing focus on the potential benefits of the technology is missing. The Committee ostensibly prioritises restricting HGE technology in the interest of society as a collective but, in doing so, neglects to consider the interests and rights of individuals. In this article, we suggest that this approach is imbalanced insofar as it fails to give sufficient weight to the promise of this technology in considering the regulation of risks and disregards the importance of the fundamental liberties underlying the use of HGE in its discussion of values and principles that should guide governance. How this is problematic is illustrated with reference to the Committee's openness to using patents as HGE governance tools and its blanket rejection of 'eugenics'. It is concluded that while the Committee makes some sensible recommendations on global governance, the Committee's approach of emphasising restrictions on HGE without also giving weight to the value of an open and liberal policy space is not something that liberal democratic states ought to follow.

  View details for DOI 10.1111/bioe.13193

  View details for Web of Science ID 001007356300001

  View details for PubMedID 37329575

• Promoting Equality in the Governance of Heritable Human Genome Editing through Ubuntu: Reflecting on a South African Public Engagement Study AMERICAN JOURNAL OF BIOETHICS Shozi, B., Thaldar, D. 2023; 23 (7): 43-49

  Abstract

  In a recent public engagement study on heritable human genome editing (HHGE) conducted among South Africans, participants approved of using HHGE for serious health conditions-viewing it as a means of bringing about valuable social goods-and proposed that the government should actively invest resources to ensure everyone has equal access to the technology for these purposes. This position was animated by the view that future generations have a claim to these social goods, and this entitlement justified making HHGE available in the present. This claim can be ethically justified in the Ubuntu ethic (deriving from South Africa) as it (a) emphasizes the interests of the community, and (b) espouses a metaphysical conception of the community that transcends the present generation and includes past and future generations. On this basis, a compelling claim can be made on behalf of prospective persons in favor of equal access to HHGE.

  View details for DOI 10.1080/15265161.2023.2207524

  View details for Web of Science ID 000992634900001

  View details for PubMedID 37204147

• Is a right to health a means to protect public health? South Africa as a model for a communitarian interpretation of the right to health for the promotion of public health INTERNATIONAL JOURNAL OF HUMAN RIGHTS Karim, S., Shozi, B. 2023; 27 (5): 925-949

  View details for DOI 10.1080/13642987.2023.2190584

  View details for Web of Science ID 000958530600001

• Is benefit sharing with research participants lawful in South Africa? An unexplored question in the governance of genomics research JOURNAL OF LAW AND THE BIOSCIENCES Thaldar, D., Shozi, B. 2023; 10 (1): lsad018

  Abstract

  Despite advocacy in favour of benefit sharing with research participants in genomics research that is conducted in South Africa, there has been little critical legal engagement with this concept. That is what this article provides by posing the hitherto unexplored-but foundational-question: Is benefit sharing with research participants lawful in South Africa? The answer is clearly 'no'. South African law provides that it is unlawful to provide any financial or other reward to research participants for donating biospecimens-except for reimbursement of reasonable costs incurred. Accordingly, benefit sharing would be unlawful. The ramifications of this conclusion are far-reaching. Most pertinently, should any benefit-sharing agreements with research be put into practice, such agreements would be unenforceable and would expose all parties involved-including foreign collaborators-to criminal prosecution. The solution for proponents of benefit sharing in South Africa would be to lobby the South African government to revise the relevant law. However, as long as the law remains as it currently is, institutions and individuals all over the world who are involved in genomics research in South Africa would be well advised to comply with the law by not engaging in benefit sharing with research participants.

  View details for DOI 10.1093/jlb/lsad018

  View details for Web of Science ID 001021551100001

  View details for PubMedID 37396826

  View details for PubMedCentralID PMC10307998

• A deliberative public engagement study on heritable human genome editing among South Africans: Study results PLOS ONE Thaldar, D., Shozi, B., Steytler, M., Hendry, G., Botes, M., Mnyandu, N., Naidoo, M., Pillay, S., Slabbert, M., Townsend, B. 2022; 17 (11): e0275372

  Abstract

  This paper reports the results of a public engagement study on heritable human genome editing (HHGE) carried out in South Africa, which was conducted in accordance with a study protocol that was published in this journal in 2021. This study is novel as it is the first public engagement study on HHGE in Africa. It used a deliberative public engagement (DPE) methodology, entailing inter alia that measures were put in place to ensure that potential participants became informed about HHGE, and that deliberations between the participants were facilitated with the aim of seeking consensus. A diverse group of 30 persons was selected to participate in the DPE study, which took place via Zoom over three consecutive weekday evenings. The main results are: Provided that HHGE is safe and effective, an overwhelming majority of participants supported allowing the use of HHGE to prevent genetic health conditions and for immunity against TB and HIV/Aids, while significant majorities opposed allowing HHGE for enhancement. The dominant paradigm during the deliberations was balancing health benefits (and associated improvements in quality of life) with unforeseen health risks (such as loss of natural immunity). The seriousness of a health condition emerged as the determining factor for the policy choice of whether to allow an application of HHGE. More generally, equal access to HHGE qua healthcare service featured as an important value, and it was uncontested that the South African government should allocate resources to promote scientific research into HHGE. These results are aligned with the policy principles for regulating HHGE in South Africa suggested by Thaldar et al. They call for urgent revision of South African ethics guidelines that currently prohibit research on HHGE, and for dedicated HHGE legal regulations that provide a clear and comprehensive legal pathway for researchers who intend to conduct HHGE research and clinical trials.

  View details for DOI 10.1371/journal.pone.0275372

  View details for Web of Science ID 000925006300011

  View details for PubMedID 36441783

  View details for PubMedCentralID PMC9704621

• The multidimensional legal nature of personal genomic sequence data: A South African perspective FRONTIERS IN GENETICS Thaldar, D. W., Townsend, B. A., Donnelly, D., Botes, M., Gooden, A., van Harmelen, J., Shozi, B. 2022; 13: 997595

  Abstract

  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.

  View details for DOI 10.3389/fgene.2022.997595

  View details for Web of Science ID 000890969800001

  View details for PubMedID 36437942

  View details for PubMedCentralID PMC9681828

• Is open-identity gamete donation lawful in South Africa? SAMJ SOUTH AFRICAN MEDICAL JOURNAL Thaldar, D., Shozi, B. 2022; 112 (6): 409-412

  Abstract

  South African (SA) gamete banks and gamete donation agencies do not offer open-identity donors, as it is generally believed that donor anonymity is a legal requirement in SA. However, analysis of SA statutory instruments and case law shows that this belief is mistaken, and that gamete donation in SA can be anywhere on the spectrum between anonymous and known. Accordingly, open-identity gamete donation would be lawful in SA and can be offered to the public by SA gamete banks and gamete donation agencies.

  View details for DOI 10.7196/SAMJ.2022.v112i6.16368

  View details for Web of Science ID 000813161900008

  View details for PubMedID 36217869

• Is South Africa ready for the future of human germline genome editing? Comparing South African law and recent proposals for global governance SOUTH AFRICAN JOURNAL OF BIOETHICS AND LAW Kamwendo, T., Shozi, B. 2021; 14 (3): 97-100

  View details for DOI 10.7196/SAJBL.2021.v14i3.761

  View details for Web of Science ID 000734252800007

• Legal issues in posthumous conception using gametes removed from a comatose male: The case of Ex Parte SN SOUTH AFRICAN JOURNAL OF BIOETHICS AND LAW Shozi, B. 2021; 14 (1): 28-32

  View details for DOI 10.7196/SAJBL.2021.v14i1.728

  View details for Web of Science ID 000686461700008

• Future of global regulation of human genome editing: a South African perspective on the WHO Draft Governance Framework on Human Genome Editing JOURNAL OF MEDICAL ETHICS Shozi, B., Kamwendo, T., Kinderlerer, J., Thaldar, D. W., Townsend, B., Botes, M. 2022; 48 (3): 165-168

  Abstract

  WHO in 2019 established the Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing, which has recently published a Draft Governance Framework on Human Genome Editing. Although the Draft Framework is a good point of departure, there are four areas of concern: first, it does not sufficiently address issues related to establishing safety and efficacy. Second, issues that are a source of tension between global standard setting and state sovereignty need to be addressed in a more nuanced fashion. Third, it fails to meaningfully engage with the extent to which the conceptualisation of human dignity may justifiably vary between jurisdictions. Fourth, the meaning of harm to the interests of a future person requires clarity. Provided these four areas of concern can be addressed, the future of the global governance of human genome editing may hold promise.

  View details for DOI 10.1136/medethics-2020-106863

  View details for Web of Science ID 000728702900001

  View details for PubMedID 33762299

  View details for PubMedCentralID PMC8899489

• Does human germline genome editing violate human dignity? An African perspective JOURNAL OF LAW AND THE BIOSCIENCES Shozi, B. 2021; 8 (1): lsab002

  Abstract

  It has been variously claimed that alterations to the human genome for reproductive purposes ought to be prohibited on the basis that doing so is contrary to human dignity. This claim leads to the conclusion that germline genome editing (GGE) ought to be categorically banned in all states committed to upholding human dignity as a right recognized in international human rights documents, and which has been entrenched in the constitutions of many liberal democracies. But is it the case that the right to human dignity is necessarily opposed to GGE? This paper explores this question through critical examination of the concept of human dignity in international human rights, and how it has been interpreted by individual states. Recognizing that the interpretation of human dignity is shaped by cultural context, the paper explores an African perspective on this issue, using South African constitutional jurisprudence on human dignity as an example. It concludes that when viewed through the lens of the African ethic of Ubuntu, there is no justification for a categorical prohibition on GGE, on the grounds that it is contrary to human dignity. This illustrates the need for a global discourse on the regulation on genome editing to be sensitive to varying perspectives-specifically on value-laden questions such as the interpretation of human rights.

  View details for DOI 10.1093/jlb/lsab002

  View details for Web of Science ID 000683382200005

  View details for PubMedID 33986951

  View details for PubMedCentralID PMC8109228

• A virtual deliberative public engagement study on heritable genome editing among South Africans: Study protocol PLOS ONE Thaldar, D., Townsend, B., Botes, M., Shozi, B., Pillay, S. 2021; 16 (8): e0256097

  Abstract

  This article outlines the protocol for a prospective study for virtual deliberative public engagement on heritable genome editing in humans. The study intends to create a platform for a diverse group of 25-30 South Africans to engage with a facilitator and each other on 15 policy questions regarding heritable genome editing, with a focus on: a) the prevention of heritable genetic conditions; b) editing for immunity; and c) editing for enhancement. The aim is to understand the views on these issues so as to inform further research and policy, and to analyse the process and effect of deliberation on opinion. Participants will be expected to study the provided resource materials and pass the entrance exam-aligning with the protocols of the Harvard Personal Genome Project. In this way, the commitment, openness and basic knowledge of the candidates will be tested to ascertain whether they are suitable participants for the deliberative engagement.

  View details for DOI 10.1371/journal.pone.0256097

  View details for Web of Science ID 000686373300068

  View details for PubMedID 34411176

  View details for PubMedCentralID PMC8376038

• Culture and context: Why the global discourse on heritable genome editing should be broadened from the South African perspective BIOLAW JOURNAL-RIVISTA DI BIODIRITTO Thaldar, D., Shozi, B., Kamwendo, T. 2021: 409-416

  View details for Web of Science ID 000983113800024

• Human germline editing: Legal-ethical guidelines for South Africa SOUTH AFRICAN JOURNAL OF SCIENCE Thaldar, D., Botes, M., Shozi, B., Townsend, B., Kinderlerer, J. 2020; 116 (9-10): 27-33

  View details for DOI 10.17159/sajs.2020/6760

  View details for Web of Science ID 000611948000013

• A critical review of the ethical and legal issues in human germline gene editing: Considering human rights and a call for an African perspective SOUTH AFRICAN JOURNAL OF BIOETHICS AND LAW Shozi, B. 2020; 13 (1): 62-67

  View details for DOI 10.7196/SAJBL.2020.v13i1.709

  View details for Web of Science ID 000574579800013

• Procreative Non-Maleficence: A South African Human Rights Perspective on Heritable Human Genome Editing CRISPR JOURNAL Thaldar, D., Shozi, B. 2020; 3 (1): 32-36

  Abstract

  If the safety and efficacy issues relating to heritable genome editing can be resolved, how should liberal democratic societies regulate the use of this technology by prospective parents who wish to effect edits to the genomes of their prospective children? We suggest that recent developments in South African law can be useful in this regard. The country's apex court recently recognized as a legal principle that the scope of possible reproductive decisions that parents may make when using new reproductive technologies excludes decisions that will cause harm to the prospective child-the principle of procreative non-maleficence. We suggest that the principle of procreative non-maleficence provides a mechanism for striking an equitable balance between two competing interests that are given legal recognition in most liberal democracies: the reproductive rights of prospective parents and the state's duty to protect child welfare.

  View details for DOI 10.1089/crispr.2019.0036

  View details for Web of Science ID 000517090700009

  View details for PubMedID 32091250

  View details for PubMedCentralID PMC7047083

• Something old, something new: applying reproductive rights to new reproductive technologies in South Africa SOUTH AFRICAN JOURNAL ON HUMAN RIGHTS Shozi, B. 2020; 36 (1): 1-24

  View details for DOI 10.1080/02587203.2020.1776632

  View details for Web of Science ID 000556909500001