scholarly journals Procreative Non-Maleficence: A South African Human Rights Perspective on Heritable Human Genome Editing

2020 ◽  
Vol 3 (1) ◽  
pp. 32-36
Author(s):  
Donrich Thaldar ◽  
Bonginkosi Shozi
Keyword(s):  
Human Rights ◽  
Human Genome ◽  
Genome Editing ◽  
South African

scholarly journals Human genome editing: how to prevent rogue actors

2020 ◽  
Vol 21 (1) ◽  
Author(s):  
Beverley A. Townsend
Keyword(s):  
Human Rights ◽  
Human Genome ◽  
Genome Editing ◽  
Novel Technologies ◽  
The Public ◽  
Inappropriate Use ◽  
Novel Technology ◽  
Regulatory Frameworks ◽  
Social Difficulties ◽  
Genomic Editing

Abstract Background Human genome editing technologies offer much potential benefit. However, central to any conversation relating to the application of such technologies are certain ethical, legal, and social difficulties around their application. The recent misuse, or inappropriate use, by certain Chinese actors of the application of genome editing technologies has been, of late, well noted and described. Consequently, caution is expressed by various policy experts, scientists, bioethicists, and members of the public with regard to the appropriate use of human germline genome editing and its possible future effect on future generations. Main text As concerns about the applications of heritable genome editing have grown, so too have the questions around what is to be done to curtail ‘rogue actors’. This paper explores various ways in which to regulate genomic editing that are socially beneficial, while being cognisant of legal and ethical principles and rights values. This is done by evolving regulatory frameworks across jurisdictions in an attempt to raise issues, address common principles, and set responsible standards for stewardship of the novel technology. Conclusions It is suggested that robust and concrete regulatory measures be introduced that are culturally and contextually sensitive, inclusive, appropriate, and trustworthy – and are based on public empowerment and human rights objectives. Doing so will ensure that we are perfectly positioned to harness and promote the benefits that novel technologies have to offer, while safeguarding public health and curtailing the ambitions of rogue actors. This it is acknowledged is no easy task, so, as a point of departure, this paper sets out a path forward by means of certain, practical recommendations – by constructing genome editing regulation in a manner that both fulfils the desire to better progress human health and that can withstand legal and ethical scrutiny. The following observations and recommendations are made: Firstly, that a solution of effective, legitimate governance should consist of a combination of national and supranational legislative regulation or ‘hard’ law, in combination with ‘soft’ ethics, firmly anchored in and underpinned by human rights values. Second, that efforts to support legal and ethical solutions should be rigorous, practical, and robust, contribute to a reaffirmation of human rights in a contextually sensitive manner, and be transnational in reach. Lastly, that greater harmonisation across jurisdictions and increased public engagement be sought. This it is proposed will address the question of how to implement a normative framework which in turn can prevent future rogue actors.

scholarly journals Future of global regulation of human genome editing: a South African perspective on the WHO Draft Governance Framework on Human Genome Editing

2021 ◽  
pp. medethics-2020-106863
Author(s):  
Bonginkosi Shozi ◽  
Tamanda Kamwendo ◽  
Julian Kinderlerer ◽  
Donrich W Thaldar ◽  
Beverley Townsend ◽  
...  
Keyword(s):  
Human Genome ◽  
Genome Editing ◽  
South African ◽  
Global Regulation ◽  
Governance Framework ◽  
Global Standards ◽  
Good Point ◽  
African Perspective ◽  
Areas Of Concern ◽  
Point Of Departure

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.

Foreigners' Rights to Work and Fair Labour Practices in South Africa: A Review of the South African Labour Legislation and Jurisprudence

2020 ◽  
Vol 35 (1) ◽  
Author(s):  
Andre Mangu
Keyword(s):  
South Africa ◽  
Human Rights ◽  
South African ◽  
Bill Of Rights ◽  
The South ◽  
Legislation And Jurisprudence ◽  
Foreign Nationals ◽  
Lay Persons ◽  
Democratic State ◽  
Labour Legislation

After several decades of apartheid rule, which denied human rights to the majority of the population on the ground of race and came to be regarded as a crime against humanity, South Africa adopted its first democratic Constitution in the early 1990s. The 1996 Constitution, which succeeded the 1993 interim Constitution, is considered one of the most progressive in the world. In its founding provisions, it states that South Africa is a democratic state founded on human dignity, the achievement of equality, the advancement of human rights and freedoms. The Constitution enshrines fundamental human rights in a justiciable Bill of Rights as a cornerstone of democracy. Unfortunately, in the eyes of a number of politicians, officials and lay-persons, the rights in the Bill of Rights accrue to South African citizens only. Xenophobia, which has been rampant since the end of apartheid, seems to support the idea that foreigners should not enjoy these rights. Foreign nationals have often been accused of posing a threat to South African citizens with regard to employment opportunities. In light of the South African legislation and jurisprudence, this article affirms the position of the South African labour law that foreign nationals are indeed protected by the Constitution and entitled to rights in the Bill of Rights, including the rights to work and fair labour practices.

Publics, Scientists and the State: Mapping the Global Human Genome Editing Controversy

2021 ◽  
pp. 1-28
Author(s):  
Ya-Wen Lei
Keyword(s):  
Public Sphere ◽  
Human Genome ◽  
Genome Editing ◽  
Scientific Research ◽  
Theoretical Framework ◽  
The State ◽  
Scientific Controversies ◽  
Chinese State ◽  
National Expert ◽  
The Impact

Abstract Literature on scientific controversies has inadequately attended to the impact of globalization and, more specifically, the emergence of China as a leader in scientific research. To bridge this gap in the literature, this article develops a theoretical framework to analyse global scientific controversies surrounding research in China. The framework highlights the existence of four overlapping discursive arenas: China's national public sphere and national expert sphere, the transnational public sphere and the transnational expert sphere. It then examines the struggles over inclusion/exclusion and publicity within these spheres as well as the within- and across-sphere effects of such struggles. Empirically, the article analyses the human genome editing controversy surrounding research conducted by scientists in China between 2015 and 2019. It shows how elite scientists negotiated expert–public relationships within and across the national and transnational expert spheres, how unexpected disruption at the nexus of the four spheres disrupted expert–public relationships as envisioned by elite experts, and how the Chinese state intervened to redraw the boundary between openness and secrecy at both national and transnational levels.

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