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Data Privacy and Health Research
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Abstract:
Protection for patient privacy is one of the most firmly established ethical principles in medicine and is mentioned in the Oath of Hippocrates. Although the principle of medical privacy evokes broad acceptance, there is less universal agreement on the specifics of how best to protect patient data privacy while permitting use of such information in health research. In my talk today, I will review ethical principles governing health research and discuss how these are reflected in current US federal regulations designed to protect the privacy of medical records. In particular, I will outline how health research is affected by new federal standards for privacy of individually identifiable health information that were enacted in 2002 as regulations mandated under the Health Insurance Portability and Accountability Act of 1996 (HIPAA). These regulations define identifiable patient data quite broadly and impose strict requirements for access. I will outline how these regulations affect clinical and epidemiologic research, review requirements for de-identification of medical data, and discuss several approaches to privacy protection specified in the regulations.
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Harry A. Guess, MD, PhD - Bio
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Harry A. Guess, MD, PhD
Vice President, Epidemiology
Merck Research Laboratories
Merck & Co., Inc.
harry_guess@merck.com
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Biography
Harry A. Guess, MD, Ph.D. is Vice President for Epidemiology in the Merck Research Laboratories, a division of Merck & Co., Inc. His department is responsible for conducting epidemiologic studies in support of all Merck products. He has provided congressional testimony on data privacy in epidemiologic research and is a member of the Data Privacy Committee of the International Society for Pharmacoepidemiology.
Dr. Guess also holds an appointment as Adjunct Professor of Epidemiology and Biostatistics at the University of North Carolina, where he teaches pharmacoepidemiology and serves as Ph.D. dissertation advisor to graduate students. He is a Fellow of the American Academy of Pediatrics, the American College of Preventive Medicine, and the American College of Epidemiology and is on the editorial consultant boards of Epidemiology, Journal of Clinical Epidemiology, and Journal of Epidemiology and Biostatistics.
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