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Selling Health Data: De-Identification, Privacy, and Speech

  • BONNIE KAPLAN
Abstract:

Two court cases that involve selling prescription data for pharmaceutical marketing affect biomedical informatics, patient and clinician privacy, and regulation. Sorrell v. IMS Health Inc. et al. in the United States and R v. Department of Health, Ex Parte Source Informatics Ltd. in the United Kingdom concern privacy and health data protection, data de-identification and reidentification, drug detailing (marketing), commercial benefit from the required disclosure of personal information, clinician privacy and the duty of confidentiality, beneficial and unsavory uses of health data, regulating health technologies, and considering data as speech. Individuals should, at the very least, be aware of how data about them are collected and used. Taking account of how those data are used is needed so societal norms and law evolve ethically as new technologies affect health data privacy and protection.

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Notes

1. Sorrell v. IMS Health Inc. et al, 131 S. Ct. 2653 (2011).

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I am grateful for the thoughtful contributions to the panel I organized on the Sorrell case for the 2011 American Medical Informatics Association Annual Symposium and for comments on a very early draft of some portions of this article by Paul DeMuro, J.D., C.P.A., M.B.A., M.B.I., Oregon Health and Science University, Portland, Oregon; Kenneth W. Goodman, Ph.D., F.A.C.M.I., University of Miami, Miami, Florida; and Carolyn Petersen, M.S., M.B.I., Mayo Clinic, Rochester, Minnesota.

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