ANTICIPATING ENHANCEMENT--ETHICAL, LEGAL, SOCIAL ISSUES

这是一个香农奖提供部分支持的研究 项目不属于指定机构的资助范围，但 在优秀的边缘。香农奖旨在提供 支持测试方法的可行性;支持进一步测试 和完善研究技术;进行二次分析或提供 数据集;或进行离散项目，以证明PI 研究能力或为已经优秀的 应用程序.以下摘要摘自原始文件 由主要经销商提交。 描述（改编自研究者摘要）：研究者 建议界定主要的伦理、法律的和社会问题 伴随着使用基因组信息来增强正常性状， 个人和家庭，并确定最好的先例， 为决策目的阐明这些问题。的问题 基因组信息用于增强目的贯穿了这三个方面 人类基因组研究所期待的新型医疗工具： 诊断试验、新药和生物制剂以及新的人类基因转移 治疗到目前为止，ELSI研究界只关注 第一组基因组产品。通过解决“遗传”问题， 所有这些工具共享的“增强”，该项目旨在 将迄今为止的工作与人类基因组面临的挑战联系起来 项目的另一边，现在臭名昭著的“治疗差距。" 调查人员的方法是传统的政策分析： 每个领域，他们将探索似乎类似的现有做法， 遗传增强（例如，整容手术，提高性能 运动和心理健康中的药物使用，性别选择，儿科生长 推广、疫苗接种），并阐明使用这些方法的意义 作为遗传学政策的模型。他们的目标是利用这种分析 就五个紧迫的遗传问题提出具体立场， 强化政策：1.做人体实验的临床研究 基因增强干预需要特殊保护？2.如何 基因组服务的专业可接受限度是否应该 画的？3.什么是公平获得遗传增强服务？ 4.如何监管基因增强技术？5. 如何 对生殖系基因治疗研究的支持是否应该受到影响 基因组学的基因增强能力 该项目的方法将主要是分析和论述： 研究人员将批评，重建，并提出规范 根据现有先例的文献进行论证， 而不是生成关于它们中的任何一个的新的原始数据。另 另一方面，他们将在两个月内出现新数据， 的方式首先，他们将与一项新的跨学科研究合作， 传统的“增强”医学实践（在黑斯廷斯 中心），从其研究小组的工作中学习， 先例的背景。二是侦查人员会乘虚而入 他们自己机构的科学和医疗资源， 确保他们的工作在科学上准确及时， 可能

THIS IS A SHANNON AWARD PROVIDING PARTIAL SUPPORT FOR THE RESEARCH PROJECTS THAT FALL SHORT OF THE ASSIGNED INSTITUTE'S FUNDING RANGE BUT ARE IN THE MARGIN OF EXCELLENCE. THE SHANNON AWARD IS INTENDED TO PROVIDE SUPPORT TO TEST THE FEASIBILITY OF THE APPROACH; DEVELOP FURTHER TESTS AND REFINE RESEARCH TECHNIQUES; PERFORM SECONDARY ANALYSIS OR AVAILABLE DATA SETS; OR CONDUCT DISCRETE PROJECTS THAT CAN DEMONSTRATE THE PI'S RESEARCH CAPABILITIES OR LEND ADDITIONAL WEIGHT TO AN ALREADY MERITORIOUS APPLICATION. THE ABSTRACT BELOW IS TAKEN FROM THE ORIGINAL DOCUMENT SUBMITTED BY THE PRINCIPAL INVESTIGATOR. DESCRIPTION (Adapted from the Investigator's Abstract): The investigators propose to delineate the major ethical, legal and social issues accompanying the use of genomic information to enhance normal traits in individuals and families, and to identify the precedents that best illuminate those issues for policy-making purposes. Questions about the use of genomic information for enhancement purposes cut across all three types of new medical tools expected from human genome research: diagnostic tests, new drugs and biologicals, and new human gene transfer therapies. Thus far, the ELSI research community has focused only on the first set of genomic products. By addressing the issues of "genetic enhancement" that all these tools share, this project is designed to bridge the work to date with the challenges that await the Human Genome Project on the other side of its now infamous "therapeutic gap." The investigators' approach is traditional for policy analysis: within each sphere, they will explore existing practices that seem analogous to genetic enhancement (e.g., cosmetic surgery, performance-enhancing drug use in sports and mental health, sex selection, pediatric growth promotion, vaccination), and spell out the implications of using them as models for policies in genetics. Their goal is to use this analysis to generate specific positions on five urgent issues of genetic enhancement policy: 1. Do the human subjects of clinical research on genetic enhancement interventions require special protections? 2. How should the professionally acceptable limits of genomic services be drawn? 3. What constitutes fair access to genetic enhancement services? 4. How should genetic enhancement technologies be regulated? 5. How should support for research towards germ-line gene therapy be affected by genomics' genetic enhancement capacities? The project's methods will be primarily analytic and discursive: the investigators will be critiquing, reconstructing, and proposing normative arguments on the basis of the literature about the existing precedents, rather than generating new primary data about any of them. On the other hand, they will inform their analyses with new data as it emerges in two ways. First, they will collaborate with a new interdisciplinary study of traditional "enhancement" practices within medicine (at the Hastings Center), to learn from the work of its research team as they examine the context of the precedents. Second, the investigators will take advantage of their own institution's scientific and medical resources, in order to insure that their work is as scientifically accurate and timely as possible.