The development of CRISPR technology has catapulted the issue of germline editing to the forefront of a debate between the goals of medical advancement and promotion of human diversity. The US National Academy of Sciences and the National Academy of Medicine recommended in a joint report that germline editing should be tightly regulated and pursued only for "serious diseases." A follow-up statement from an international summit on human genome editing emphasized a more general point that "the risks [are] too great to permit clinical trials of germline editing at this time." Here we review their recommendations in the context of genetic deafness, a condition that historically has been viewed by the medical community as a pathology. Deafness does not meet the standard of "serious disease" for experiments with human germline editing, but there is a real concern that scientists may soon begin to do germline editing with deaf individuals because, as we will discuss, they are in many ways ideal subjects for a clinical study of CRISPR, though their condition is neither fatal nor debilitating. In light of this, we worry about the potential for medical overreach and expediency. Drawing from examples of living deaf communities around the world, we propose an expansive view of human diversity that recognizes the value of genetic, linguistic, and cultural diversity to the future health of humankind.

中文翻译：

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谁先走？聋人和 CRISPR 种系编辑

CRISPR 技术的发展将生殖系编辑问题推到了医学进步目标与促进人类多样性之间争论的前沿。美国国家科学院和美国国家医学科学院在一份联合报告中建议，应严格监管生殖系编辑，并仅针对“严重疾病”进行。人类基因组编辑国际峰会的后续声明强调了一个更普遍的观点，即“风险太大，目前不允许进行生殖系编辑的临床试验。” 在这里，我们在遗传性耳聋的背景下回顾了他们的建议，这种情况历来被医学界视为一种病理学。耳聋不符合“大病”标准 用于人类生殖系编辑实验，但真正令人担忧的是科学家可能很快就会开始对聋人进行生殖系编辑，因为正如我们将要讨论的，他们在许多方面都是 CRISPR 临床研究的理想对象，尽管他们的情况是既不致命也不使人衰弱。有鉴于此，我们担心医疗过度和权宜之计的可能性。从世界各地聋人社区的例子中，我们提出了人类多样性的广阔视野，承认遗传、语言和文化多样性对人类未来健康的价值。尽管他们的病情既不致命也不虚弱。有鉴于此，我们担心医疗过度和权宜之计的可能性。从世界各地聋人社区的例子中，我们提出了人类多样性的广阔视野，承认遗传、语言和文化多样性对人类未来健康的价值。尽管他们的病情既不致命也不虚弱。有鉴于此，我们担心医疗过度和权宜之计的可能性。从世界各地聋人社区的例子中，我们提出了人类多样性的广阔视野，承认遗传、语言和文化多样性对人类未来健康的价值。