The Consequences of Human Genome Editing on Human Rights

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.

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Toward anticipatory governance of human genome editing: a critical review of scholarly governance discourse

Journal of Responsible Innovation ◽

10.1080/23299460.2021.1957579 ◽

2021 ◽

pp. 1-39

Author(s):

John P. Nelson ◽

Cynthia L. Selin ◽

Christopher T. Scott

Keyword(s):

Human Genome ◽

Genome Editing ◽

Critical Review ◽

Anticipatory Governance

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

The China Quarterly ◽

10.1017/s0305741021000229 ◽

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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Human genome editing and the need for regulation and deliberation

Bioethica Forum ◽

10.24894/bf.2017.10017 ◽

2017 ◽

Author(s):

Daniel Gregorowius

Keyword(s):

Human Genome ◽

Genome Editing

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Legal support for the creation and use of genetic technologies in medicine

Nauchno-prakticheskii zhurnal «Medicinskaia genetika» ◽

10.25557/2073-7998.2020.10.77-78 ◽

2020 ◽

pp. 77-78

Author(s):

В.В. Лапаева

Keyword(s):

Human Rights ◽

Great Britain ◽

Human Genome ◽

Germ Line ◽

Genetic Integrity ◽

Scientific Creativity ◽

Genetic Technologies ◽

Genomic Editing ◽

The Given ◽

Proper Balance

Правовая политика России в сфере создания и применения генетических технологий в медицине не обеспечивает в должной мере баланс между системой прав человека, гарантирующих защиту его достоинства и охрану здоровья, и свободой научного творчества. Несогласованность этих прав человека проявляется в том, что при отсутствии запретов на исследования с применением технологий наследуемого редактирования генома человека законодательство лишает патентоспособности любые технологии по модификации генетической целостности клеток зародышевой линии человека. Последовательный правовой подход предполагает введение ограничений на возможность геномного редактирования зародышевой линии и запрета на патентование способов такого редактирования, не выходящего за рамки заданных ограничений. При разработке такого похода целесообразно учесть опыт Великобритании. The Russian legal policy in the field of the medicine genetic technologies creation and application does not provide a proper balance between the system of human rights that guarantee the protection of its dignity and health, and the freedom of scientific creativity. The non-coordination of these human rights is manifested in the fact that in the absence of prohibitions on research using technologies of human genome inherited editing, the law deprives patentability of any technology for modifying the genetic integrity of human germline cells. A consistent legal approach involves the restrictions on the possibility of the germ line genomic editing and the prohibition of patenting the methods of such editing, which does not go beyond the given restrictions. It is advisable to take into account the experience of Great Britain.

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