The Body as Property: Disputes Over the Control of Human Tissue in a Biotechnology Age

在过去十年中，与收集和使用身体组织有关的一系列科学和商业发展为科学研究人员、卫生保健提供者、卫生保健机构、患者和整个社会提出了深刻的问题。血液、组织、基因和其他人体器官已经成为宝贵的资源--制药产品的信息和原材料来源。这是一项关于人体组织研究、临床和商业用途的一系列新出现的争议的科学、社会、伦理和法律基础的研究。该项目将分析最近发生的七起关于身体组织的纠纷。这些争端提供了一个机会来审视参与者的利益、话语和利害关系。每个案例研究将探索所涉及的科学和技术过程；科学家、患者、消费者团体和该过程中的其他参与者如何表征身体组织；在争端中唤起诸如自主、隐私和对科学企业的信任等价值观的方式；在解决争端时讨论的社会和法律标准；专业组织关于如何处理争端的建议；以及对未来科学努力的影响。该项目将利用对人体文化的研究和对新技术的抵触研究产生的理论，分析人体不同概念之间的冲突在多大程度上引发了最初的争端，以及政策制定者未能考虑人体的社会意义在多大程度上导致了进一步的争端。发现和分析的信息将有助于那些制定政策的人更好地了解人们对他们的身体材料的看法，以及他们对这些材料的适当处理的期望。这项研究旨在帮助科学家、临床医生、法官和政策制定者，他们越来越多地面临着由于收集、分析和使用身体组织而产生的需求和担忧。它将有助于提高决策的质量，迄今为止，这些决策往往受到对身体组织的社会意义的有限背景理解的限制。该项目的产品将得到广泛传播；它们将包括文章和演示文稿，以及一本由两名主要调查人员--一名律师和一名社会学家--共同撰写的广泛可用的书籍。

A series of scientific and commercial developments in the past decade relating to the collection and use of body tissue raise profound issues for scientific researchers, health care providers, health care institutions, patients, and society at large. Blood, tissue, genes and other human body parts have become valuable resources -- sources of information and raw materials for pharmaceutical products. This is a study of the scientific, social, ethical and legal underpinnings of a series of emerging disputes over the research, clinical and commercial uses of body tissue. The project will analyze seven recent disputes over body tissue. The disputes provide an opportunity to examine the interests, the discourses and the stakes of the actors. Each case study will explore the scientific and technological processes involved; the way scientists, patients, consumer groups, and other participants in the process characterize body tissue; the manner in which values such as the autonomy, privacy, and trust in the scientific enterprise were evoked in the dispute; the social and legal criteria that were discussed in resolving the dispute; the recommendations of professional organizations about how the dispute should be handled; and the implications for future scientific endeavors. Drawing upon theories emerging from studies of the culture of the body and studies of resistance to new technologies, the project will analyze the extent to which a conflict between differing concepts of the body provoked the initial dispute and the extent to which policy makers' failure to consider the social meaning of the body led to further disputes. The information uncovered and analyzed will be available to help those designing policies to better understand people's view of their bodily materials and their expectations about the appropriate handling of those materials. The research is intended to aid scientists, clinicians, judges, and policy makers who are increasingly confronted with demands and concerns arising from the collection, analysis, and use of body tissue. It will contribute to the quality of decisions that to date have often been constrained by a limited contextual understanding of the social meaning of body tissue. Products from the project will be widely disseminated; they will include articles and presentations, as well as a broadly accessible book, jointly authored by the two principal investigators, a lawyer and a sociologist.