Note Added In Proof

Since the writing of this chapter, the Secretary of Health and Human Services has issued a call for comments regarding the possibility that ''facially de-identified data'' could be made available for research and public health purposes under a data use agreement in which the researcher promises to protect the privacy of the data subjects and safeguard the data from use or disclosure for impermissible purposes. If the Secretary decides to revise the regulation to permit this option, then many of the untoward effects discussed in this chapter can be avoided. Many in the research community have applauded the possible revisions as achieving a more appropriate balancing of the public interest in research and public health with the public interest in protecting the privacy of data subjects. Some privacy advocates concerned with protecting the data subject's ability to control uses of facts, have expressed concern that even these arrangements for de-personalized, confidential use of facts compromises the privacy interests of the data subjects. Undoubtedly, when the Secretary decides whether and how to modify the regulations, the research and public health communities will need to re-examine yet again the arrangements under which data are made available and analyzed for public health and research purposes.

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