Selling Health Data: De-Identification, Privacy, and Speech
Cambridge Quarterly of Healthcare Ethics, 24(3):256-271, 2015
Yale University Institute for Social and Policy Studies Working Paper No. ISPS 14-024
32 Pages Posted: 15 Oct 2014 Last revised: 10 Jan 2018
Date Written: July 1, 2014
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 US and R v. Department of Health, Ex Parte Source Informatics Ltd in the UK concern privacy and health data protection, data de-identification and re-identification, drug detailing (marketing), commercial benefit from required disclosure of personal information, clinician privacy and 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 is collected and used. Taking account of how that data is used is needed so societal norms and law evolve ethically as new technologies affect health data privacy and protection.
Keywords: Confidentiality, Health Data Privacy, Ethics, Health Records, Secondary Use, Big Data, Data Mining, Pharmaceutical Marketing, Health Data Sale, De-Identification, HIPAA, EU Data Protection Directive, Sorrell v. IMS Health, Inc., R v. Department of Health, Ex Parte Source Informatics Ltd.
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