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

在过去十年中，与身体组织的收集和使用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、基因和其他人体部位已成为宝贵的资源--药品的信息来源和原材料。 这是一项研究的科学，社会，道德和法律的基础上的一系列新出现的争端的研究，临床和商业用途的身体组织。 该项目将分析最近七起关于人体组织的争议。 这些争端提供了一个机会，可以审查行为者的利益、话语和利害关系。 每个案例研究将探讨所涉及的科学和技术过程;科学家，患者，消费者团体和其他参与者在该过程中表征身体组织的方式;在争议中唤起的价值观，如自主权，隐私权和对科学企业的信任;在解决争议中讨论的社会和法律的标准;专业组织关于如何处理争议的建议;以及对未来科学努力的影响。 本课题将利用身体文化研究和对新技术的抵制研究中产生的理论，分析最初的争论是由不同的身体概念之间的冲突引起的，以及政策制定者没有考虑到身体的社会意义而导致的争论。 所发现和分析的信息将有助于政策制定者更好地了解人们对其身体材料的看法以及他们对适当处理这些材料的期望。 该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收集，分析和使用身体组织所产生的需求和担忧。 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社会意义的有限背景理解的限制。该项目的成果将得到广泛传播，其中包括由两位主要调查员（一名律师和一名社会学家）共同撰写的文章和介绍，以及一本可广泛查阅的书。

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.