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Vaccine Safety Research, Data Access, and Public Trust
The VSD is a public resource that is designed to inform important public health policy decisions. By the very nature of its potential to influence policy, the public demands and deserves access to the data used to influence those decisions and transparency in the processes that permit or restrict access. If the VSD indeed is intended to be used as a foundation of policy decisions, there is a public need to share data fairly and to be as transparent as possible while protecting the confidentiality of individually identifiable information in the VSD.
The committee uses the term VSD data sharing program throughout this report for the sake of consistency and ease of reference. Despite the limitations of the sharing function of the VSD data sharing program, the term is now well established.
CURRENT STANDARDS OF PRACTICE OF SIMILAR DATA SHARING PROGRAMS
Benefits and Costs of Sharing Data
Sharing of VSD data or any other type of data has both benefits and costs. Some benefits and costs may be unique to the sharing of particular datasets, but the often-cited benefits of data sharing include (Fienberg, 1994; NRC and the Committee on National Statistics, 1985):
Reinforcement of open scientific inquiry;
Verification, refutation, or refinement of original results;
Promotion of new research through existing data;
Encouragement of the appropriate use of empirical data in policy formulation and evaluation;
Improvement of methods for data collection and measurement;
Development of theoretical knowledge and knowledge of analytic techniques;
Encouragement of multiple perspectives;
Provision of resources for training in research;
Protection against faulty data;
Greater application of scientific research in decision-making;
Reduction of the expense of duplicative data collection and the concomitant burden on human subjects; and
Respect for the desire of respondents to contribute to societal knowledge.
In the case of VSD data, the committee finds that, especially in the context of government-funded research, increased data sharing also promotes greater transparency in the derivation of research results, which