Collaborative Research on a Panel Study of Confidentiality and Data Access

近几十年来，公开收集的数据的用途大大扩大。研究就业、收入、教育、住房、犯罪、健康和其他与国家政策有关的问题的人越来越多地使用人口普查、抽样调查和行政记录中关于个人的数据。在相当程度上，这些用途得到了数据提供者--收集和传播数据的联邦机构--的支持和鼓励。扩大访问的关键是发布公共使用的微数据文件的日益普遍的做法；即含有删除了名称和地址等识别符的个别数据记录的文件。这些文件的可获得性使研究人员能够设计统计分析，以满足他们的分析兴趣和具体要求。然而，可以提供的详细信息的数量受到数据提供者保护数据机密性的义务的限制。然而，由于保密、匿名、隐私和知情同意的定义不完善，而且往往是独一无二的，所以在讨论获取和保密问题时，常常会产生相当大的混淆和误解--所有这些往往都会被混淆。国家科学院国家统计委员会和社会科学研究理事会正在联合召集一个专家小组来研究这些问题，并向联邦机构提出一系列建议，以便更好地处理与数据获取和保密有关的问题。该小组的目的是向研究界和数据提供者提供咨询意见，说明如何在采取适当保障措施的情况下改进获取情况，以保持机密性，并避免对公共合作产生不利影响的不适当风险。调查的范围主要集中在关于人的统计数据上。该小组还计划处理来自商业机构和其他法律实体的数据的保密性，如果对这些数据提出类似的问题。将在更广泛地考虑法律、伦理和科学政策问题的范围内，召开关于披露限制技术和知情同意的特别研讨会。

In recent decades, uses of publicly collected data have expanded greatly. Data on individuals from censuses, sample surveys, and administrative records are used increasingly by those who study employment, income, education, housing, crime, health, and other issues relevant to national policy. To a considerable degree, these uses have been made possible and encouraged by the data providers--the federal agencies that collect and disseminate the data. Key to the expansion of access has been the increasingly common practice of issuing public-use microdata files; that is, files containing individual data records with identifiers such as name and address deleted. The availability of such files permits researchers to design statistical analyses to fit their analytic interests and specific requirements. The amount of detailed information that can be made available is, however, limited by the data providers' obligation to protect the confidentiality of data. Considerable confusion and misunderstanding, however, often arise in discussions of access and confidentiality because of poorly developed and often idiosyncratic definitions of confidentiality, anonymity, privacy, and informed consent--all of which tend to be confounded. The Committee on National Statistics of the National Academy of Sciences and the Social Science Research Council are jointly convening a panel of experts to study these issues and to provide a set of recommendations to federal agencies for better handling issues relating to data access and confidentiality. The purpose of the panel is to advise the research community and providers of data on how access may be improved with appropriate safeguards to preserve confidentiality and without undue risk of adverse effects on public cooperation. The scope of the investigation principally focuses on statistical data about people. The panel plans also to address confidentiality of data from business establishments and other legal entities, to the extent that similar questions are raised about such data. Special workshops will be convened on disclosure limitation techniques and informed consent within a broader consideration of legal, ethical, and science policy issues.