Improving Access to and Confidentiality of Research Data by Committee on National Statistics, National Research Council

By Committee on National Statistics, National Research Council

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Can confidentiality safeguards and accountability be effective enough, and the risk of harm to individuals low enough, to allow most such linkages to be considered “routine” or “ordinary” research uses in the sense discussed above? Concluding Remarks Baily concluded her presentation by offering the following assessment: • There is consensus on the existence of a right to informational privacy, but not on the extent to which policies should go to protect that right or on how to implement such policies in practice.

Many participants believe that increased harmonization of the legal framework is needed, if for no other reason than to allow researchers to know roughly what is expected without that expectation shifting from context to context. 4Donna Eden pointed out that there is considerable room for increasing penalties. For instance, in HIPAA there exists no private right of action for subjects. The act sets forth broad criminal prohibition, but only minor criminal sanctions for disclosure of data in violation of regulations.

Research is also an essential element in the support of individual civil rights and the right to a fair trial. Moreover, private organizations must be able to produce research results to carry out their roles effectively. Individuals cannot refuse to provide personal information to private entities such as educational institutions, health care delivery organizations, and employers unless they are willing to forego education, health care, and employment. In some cases, research can be done on data collected from volunteers, but in others, unacceptable bias would result.

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