CommentaryHealth Information Technology

Electronic Consent Channels: Preserving Patient Privacy Without Handcuffing Researchers

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Science Translational Medicine  09 Feb 2011:
Vol. 3, Issue 69, pp. 69cm4
DOI: 10.1126/scitranslmed.3002037


  • Fig. 1 Heel pricks support healing.

    Collected by making a small puncture in a baby’s heel at birth, newborn bloodspots are precious resources for the development of modern diagnostic tests and disease treatments.

  • Fig. 2 Privacy matters.

    The ability to make decisions about how their medical information can and cannot be used empowers patients and enhances their willingness to share health data for research purposes. Depicted here is a sample of the kinds of privacy decisions one can make when using the Private Access application. Users can set privacy preferences that regulate access to their medical information, and all consent decisions can be altered at any time. Such technology-driven data-sharing projects have been designed to assess the significance of dynamic consent in the quest for access to personal health information to be used for clinical research purposes. However, without an opportunity to effectively consent to such access, use of these data for clinical research raises significant concerns by some parents.


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