Incidental Enhancement: Addressing a Neglected Policy Issue in Human Genome Editing

附带增强：解决人类基因组编辑中被忽视的政策问题

• 批准号: 10363704
• 负责人: Rosemary Jean Cadigan
• 金额: $ 77.75万
• 依托单位: UNIV OF NORTH CAROLINA CHAPEL HILL
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-05-01 至 2024-02-28
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10363704
• 关键词: Address; Affect; Agreement; Animal Experimentation; Animals; Asia; Automobile Driving; Basic Science; Case Study; Case-Control Studies; Categories; Clinical; Clinical Protocols; Communities; Consensus; Country; Data; Development; Diffusion; Disclosure; Disease; Empirical Research; Ethical Analysis; Ethics; Europe; Explosion; Future; Genes; Genome; Genomics; Goals; Health Benefit; Human; Human Genetics; Human Genome; Incentives; Influentials; International; Intervention; Interview; Judgment; Knowledge; Laws; Legal; Medical; Mission; Modeling; Modification; Morals; National Human Genome Research Institute; North America; Pathway interactions; Play; Policies; Policy Analysis; Policy Maker; Positioning Attribute; Posture; Prevention; Preventive; Process; Professional Role; Public Health; Reporting; Research; Research Design; Role; Science; Science Policy; Scientist; Shapes; Societies; Sum; Taxonomy; Translational Research; Translations; Weight; Work; authority; design; disorder prevention; experience; genome editing; interest; meetings; member; neglect; policy implication; pre-clinical; prevent; preventive intervention; social factors; theories; trait; translational pipeline

PROJECT SUMMARY/ ABSTRACT The increasing pace and international diffusion of developments in human genome editing research have prompted ongoing efforts to develop responsible governance for such research. One point of broad agreement across these efforts is that human genome editing research should prioritize medical applications over attempts to enhance human traits because of the moral concerns the latter would raise. What qualifies as human enhancement and how to address issues that may arise in this arena remain uncertain. Moreover, several influential reports expand their interpretation of medical applications beyond disease treatment to endorse disease prevention as a goal for genome editing research. Basic human genome research and animal studies aspiring to this goal are already underway. But preventing disease through human genome editing would incidentally facilitate human enhancement applications in a variety of ways. If these translational research efforts are penalized by policy concerns about those applications, then their preventive health benefits could be lost. Conversely, society could be caught off guard by the emergence of genome editing applications that evoke the very moral concerns that the policy line against enhancement is meant to forestall. To responsibly anticipate these challenges, science policymakers will need to know more about the salience of enhancement concerns in the context of preventive genome editing (PGE) research and how best to develop research governance to address them. This project addresses these needs through the following research questions: 1) How do the goals, incentives and values driving cases of preclinical PGE research affect the ways that its incidental enhancement implications are interpreted and addressed for governance purposes? 2) How well might different forms of research governance be expected to anticipate and address these different concerns? 3) Given the potential human health benefits of preventive genome editing research, what ethical weight should science policy give to the various enhancement concerns? Answering these questions requires both empirical research and ethical analysis. Aim 1 enlists scientists to examine the professional and social factors that shape the trajectory of basic research relevant to preventive genome editing. Their perspectives will inform a taxonomy of different ways of interpreting incidental enhancements for policy purposes, and preview of the governance challenges they will raise. Aim 2 follows national and global genome editing policy groups to capture the lessons of their experiences, in order to assess the relative merits of different approaches to governance in dealing with incidental enhancement concerns. Both of these efforts will be drawn together in Aim 3, to inform an empirically grounded ethical analysis of the policy choices facing those engaged in genome editing research governance in different cases. The product of this project will be a set of case studies designed to help science policy makers, the research community and the public anticipate the incidental enhancement concerns that preventive genome editing research will pose.

项目摘要/摘要 人类基因组编辑研究进展的加速和国际扩散已经 推动了为这类研究制定负责任的治理的持续努力。有一点是大体一致的 在这些努力中，人类基因组编辑研究应该优先考虑医学应用，而不是尝试 因为后者会引起道德上的担忧，所以要提升人类的特质。什么才算是人类？ 加强以及如何解决这一领域可能出现的问题仍不确定。此外，还有几个 有影响力的报告将他们对医疗应用的解释扩展到疾病治疗之外，以支持 将疾病预防作为基因组编辑研究的目标。基础人类基因组研究和动物研究 对这一目标的渴望已经在进行中。但通过编辑人类基因组来预防疾病 顺便说一句，以各种方式促进人类增强应用。如果这些翻译研究 由于对这些应用的政策担忧，这些努力受到了惩罚，那么它们的预防性健康好处可能是 迷路了。相反，基因组编辑应用程序的出现可能会让社会措手不及，这些应用程序可以唤起 反对强化的政策路线意在预防的道义上的担忧。负责任地 预见到这些挑战，科学政策制定者将需要更多地了解增强的重要性 在预防性基因组编辑(PGE)研究和如何最好地开展研究方面的关切 治理来解决这些问题。本项目通过以下研究问题解决这些需求：1) 临床前前列腺素E研究的目标、激励和价值驱动案例如何影响其 为了治理的目的来解释和处理附带的增强含义？2)有多好 可以期待不同形式的研究治理来预见和解决这些不同的担忧吗？ 3)考虑到预防性基因组编辑研究对人类健康的潜在益处， 科学政策应该给予各种增强关注吗？要回答这些问题，既需要 实证研究和伦理分析。Aim 1邀请科学家检查职业和社会因素 这决定了与预防性基因组编辑相关的基础研究的轨迹。他们的观点将告诉我们 为政策目的解释附带增强的不同方式的分类，以及预览 它们将带来治理方面的挑战。目标2遵循国家和全球基因组编辑政策小组 吸取他们的经验教训，以评估不同方法的相对优点 在处理附带的增强问题时的治理。这两项努力将在 目标3，对从事基因组工作的人所面临的政策选择进行基于经验的伦理分析 编辑不同情况下的研究治理。该项目的产品将是一套设计的案例研究 为了帮助科学政策制定者、研究界和公众预期随之而来的增强 预防性基因组编辑研究将带来的担忧。