The late 2018 announcement of the claimed births of CRISPR-edited babies has stimulated widespread condemnation and calls by some leading scientists for a moratorium on any further germline genome editing (GGE) for reproductive purposes. Concurrently, national and international bodies are calling for the development of robust guidelines and regulations that will identify permissible conditions under which such GGE efforts might eventually proceed. Crucially, these conditions go beyond rigorous safety standards to address some of the social and ethical concerns that arise with germline interventions. As these bodies convene to navigate this unique terrain, we suggest an important standard for generating ethically robust guidelines. Our approach builds from concerns about social exclusion and social justice with a focus on fundamental human rights. We believe that a deontological or rights-based approach, rather than a utilitarian approach, is needed to ensure that this socially disruptive technology minimizes further marginalization of people with disabilities and does not create a new form of social injustice. In pursuit of a deontological framework, we propose the implementation of an objective assessment tool: the Human Rights Impact Assessment (HRIA). Use of the HRIA establishes necessary constraints on applications of GGE in order to safeguard the most vulnerable members of society.

中文翻译：

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关注人权：CRISPR 种系基因组编辑伦理和监管框架

2018 年底宣布 CRISPR 编辑婴儿出生的消息引起了广泛的谴责，一些领先科学家呼吁暂停任何进一步的生殖系基因组编辑 (GGE) 以用于生殖目的。同时，国家和国际机构呼吁制定强有力的指导方针和法规，以确定此类 GGE 工作最终可能进行的允许条件。至关重要的是，这些条件超出了严格的安全标准，以解决生殖系干预引起的一些社会和伦理问题。当这些机构聚集在一起探索这个独特的领域时，我们建议制定一个重要的标准来制定道德上稳健的指导方针。我们的方法建立在对社会排斥和社会正义的关注之上，重点关注基本人权。我们认为，需要一种义务论或基于权利的方法，而不是功利主义的方法，以确保这种具有社会破坏性的技术最大限度地减少残疾人的进一步边缘化，并且不会造成新形式的社会不公正。为了追求道义框架，我们建议实施客观评估工具：人权影响评估（HRIA）。HRIA 的使用对 GGE 的应用建立了必要的限制，以保护社会中最脆弱的成员。我们建议实施客观评估工具：人权影响评估 (HRIA)。HRIA 的使用对 GGE 的应用建立了必要的限制，以保护社会中最脆弱的成员。我们建议实施客观评估工具：人权影响评估 (HRIA)。HRIA 的使用对 GGE 的应用建立了必要的限制，以保护社会中最脆弱的成员。