Collaborative Research on a Panel Study of Confidentiality and Data Access

近几十年来，公开收集数据的使用范围大大扩大。研究就业、收入、教育、住房、犯罪、卫生和其他与国家政策有关的问题的人越来越多地使用来自人口普查、抽样调查和行政记录的个人数据。在很大程度上，这些用途是由数据提供者——收集和传播数据的联邦机构——促成和鼓励的。扩大获取的关键是日益普遍的发放公共使用微数据文件的做法；也就是说，包含带有标识符（如名称和地址）的单个数据记录的文件将被删除。这些文件的可用性允许研究人员设计统计分析，以适应他们的分析兴趣和具体要求。但是，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，由于对机密性、匿名性、隐私性和知情同意的定义不完善，而且往往是特殊的，所有这些都容易混淆，因此，在讨论访问和保密问题时，经常会出现相当大的混淆和误解。美国国家科学院国家统计委员会和社会科学研究委员会正在联合召集一个专家小组来研究这些问题，并向联邦机构提供一套建议，以便更好地处理与数据访问和保密有关的问题。该小组的目的是向研究界和数据提供者提供建议，说明如何通过适当的保障措施来改善获取，以保护机密性，并避免对公共合作产生不利影响的不当风险。调查的范围主要集中在关于人的统计数据上。该小组还计划解决来自商业机构和其他法律实体的数据的机密性问题，如果对此类数据提出了类似的问题。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限制披露技术和知情同意的特别讲习班。

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.