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Human genome editing: how to prevent rogue actors

机译:人类基因组编辑:如何防止流氓演员

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摘要

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. 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. 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.
机译:人类基因组编辑技术提供了很大的潜在利益。然而,与应用此类技术有关的任何对话的核心是围绕其应用的伦理,法律和社会困难。最近滥用,或不当使用,由某些中国演员的基因组编辑技术的应用已经是晚期,注意到和描述。因此,谨慎由各种政策专家,科学家,生物学家和公众的成员表示,关于适当使用人种种系基因组编辑及其对后代可能的效果。作为对遗传基因组编辑的应用的担忧已经发展,所以在遏制“流氓演员”的情况下也有什么问题。本文探讨了各种方式来规范社会有益的基因组编辑,同时认识到法律和道德原则和权益。这是通过在试图提出问题,解决共同原则,并为新颖技术的管理标准制定负责任标准来完成跨国管辖区的监管框架来完成的。有人建议,介绍稳健和具体的监管措施,这些措施是在文化和上下文上敏感的,包容性,适当的,可靠的 - 以及基于公共赋权和人权目标。这样做会确保我们完全定位于利用并促进新技术必须提供的好处,同时维护公共卫生,削减流氓行动者的野心。这是确认的是没有容易的任务,因此,作为一个出发点,通过某些实用的建议,通过构建基因组编辑调节来规定了一定的实际建议,以满足更好的进展人类健康的愿望这可以承受合法和道德的审查。提出了以下意见和建议:首先,有效的合法治理解决方案应由国家和超级立法规范或“难道”法则组合,与“软”伦理相结合,牢牢地锚定并受到人类的支撑权利值。其次,应对法律和道德解决方案的努力应该是严格的,实用性和强大的,促进了以上下文敏感的方式重申人权,并在恐慌中成为跨国。最后,寻求跨国管辖区的统一和增加公众参与。这提出了解决如何实施规范性框架的问题,这反过来可以防止未来的流氓演员。

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