ANTICIPATING ENHANCEMENT--ETHICAL, LEGAL, SOCIAL ISSUES

这是香农奖，为这项研究提供部分支持 项目低于指定研究所的资助范围，但 都在最优秀的边缘。香农奖旨在提供 支持测试该方法的可行性；开发进一步的测试 并改进研究方法；进行二次分析或可用 数据集；或执行可演示PI的离散项目 研究能力或为已经功成名就的 申请。下面的摘要摘自原始文件 由首席调查员提交。 描述(改编自《调查员摘要》)：调查员 建议划定主要的道德、法律和社会问题 伴随着基因组信息的使用来增强正常的性状 个人和家庭，并找出最好的 阐明这些问题以供决策之用。关于的问题 将基因组信息用于增强目的贯穿所有这三个方面 人类基因组研究有望带来的新医疗工具类型： 诊断性测试、新药和生物制品，以及新的人类基因转移 治疗。到目前为止，ELSI研究界只专注于 第一套基因组产品。通过解决“遗传”的问题 所有这些工具共享的增强功能，该项目旨在 将迄今的工作与等待人类基因组的挑战联系起来 项目的另一边，现在臭名昭著的“治疗缺口”。 调查人员的方法是进行政策分析的传统方法：在 在每个领域，他们将探索看似相似的现有实践 到基因增强(例如，整容手术、提高成绩 运动和心理健康、性别选择、儿科成长中的药物使用 推广、接种疫苗)，并详细说明使用它们的影响 作为遗传学政策的典范。他们的目标是利用这一分析 就遗传基因的五个紧急问题提出具体立场 强化政策：1.做人体受试者的临床研究 基因增强干预需要特殊保护吗？2.如何 基因组服务的专业可接受限度是否应该是 抽签？3.什么构成公平获得遗传增强服务？ 4.应如何监管遗传增强技术？5.如何监管 对生殖系基因疗法研究的支持应该受到影响吗 通过基因组学的遗传增强能力？ 该项目的方法将主要是分析和论述的： 调查人员将对规范进行批评、重建并提出建议 在现有先例文献的基础上进行论证， 而不是生成关于其中任何一个的新的主要数据。另一方面 另一方面，当新数据分成两部分出现时，他们将用新数据来通知他们的分析 方式。首先，他们将与一项新的跨学科研究合作 医学领域的传统“强化”实践(在黑斯廷斯 中心)，以学习其研究团队的工作，因为他们审查 先例的背景。其次，调查人员将利用 本机构的科学和医疗资源，以便 确保他们的工作在科学上准确和及时 有可能。

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.