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The Use of Medical Records in Research: What Do Patients Want?

Published online by Cambridge University Press:  01 January 2021

Nancy E. Kass ,
Marvin R. Natowicz ,
Sara Chandros Hull ,
Ruth R. Faden ,
Laura Plantinga ,
Lawrence O. Gostin  and
Julia Slutsman
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Extract

In the past ten years, there has been growing interest in and concern about protecting the privacy of personal medical information. Insofar as medical records increasingly are stored electronically, and electronic information can be shared easily and widely, there have been legislative efforts as well as scholarly analyses calling for greater privacy protections to ensure that patients can feel safe disclosing personal information to their health-care providers. At the same time, the volume of biomedical research conducted in this country continues to grow. The budget of the National Institutes of Health, for example, was $20,298 million in 2001, having more than doubled from a budget of $9,218 million 10 years before. This growing body of research includes increased efforts to use stored medical records as a source of data for health services, epidemiologic, and clinical studies.

Type
Article
Information
Journal of Law, Medicine & Ethics , Volume 31 , Issue 3 , Fall 2003 , pp. 429 - 433
Copyright
Copyright © American Society of Law, Medicine and Ethics 2003

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References

National Institutes of Health, Budget FY 2002/2001, formerly at <http://www.nih.gov/news/budgetFY2002/FY2001investments.htm#totalbudget> (last visited July 2, 2001).+(last+visited+July+2,+2001).>Google Scholar
Actual Obligations, by Institute, Center, and Division: FY 1988-FY 1997, formerly at <http://www4.od.nih.gov/ofm/PRIMER97/page38.stm> (last visited July 10, 2001).+(last+visited+July+10,+2001).>Google Scholar
Gostin, L.O., “National Health Information Privacy: Regulations Under the Health Insurance Portability and Accountability Act,” JAMA, 285 (2001): 3015–21.CrossRefGoogle Scholar
Minn. Stat. § 144.335 (1997).Google Scholar
Wald, N. et al., “Use of Personal Medical Records for Research Purposes,” British Medical Journal, 309 (1994): 1422–24.CrossRefGoogle Scholar
Al-Shari, R. Warlow, C., “Using Patient-Identifiable Data for Observational Research and Audit,” British Medical Journal, 321 (2000): 1031–32; Gostin, L.O. Hadley, J., “Health Services Research: Public Benefits, Personal Privacy, and Proprietary Interests,” Annals of Internal Medicine, 129 (1998): 835.Google Scholar
Harris, L., "Equifax-Harris Consumer Privacy Survey," Study Number 638114, Oct. 8, 1996.Google Scholar
Melton, L.J., “The Threat to Medical Records Research,” N. Engl. J. Med., 337 (1997): 1466–70.CrossRefGoogle Scholar
Yawn, B.P. et al., “The Impact of Requiring Patient Authorization for Use of Data in Medical Records Research,” Journal of Family Practice, 47 (1998): 361–65.Google Scholar
Sartwell, P.E. et al., “Thromboembolism and Oral Contraceptives: An Epidemiologic Case-Control Study,” American Journal of Epidemiology, 90 (1969): 365–80.CrossRefGoogle Scholar
Lydon-Rochelle, M. et al., “Risk of Uterine Rupture During Labor Among Women with Prior Cesarean Delivery,” N. Engl. J. Med, 345 (2001): 3–8.CrossRefGoogle Scholar
Jencks, S.F. et al., “Quality of Medical Care Delivered to Medicare Beneficiaries: A Profile at State and National Levels,” JAMA, 284 (2000): 1670.Google Scholar
United States General Accounting Office, Report to Congressional Requesters. Medical Records Privacy: Access Needed for Health Research, but Oversight of Privacy Protections is Limited, GAO/HEHS-99-55 (February 1999).Google Scholar
Appelbaum, P.S. Roth, L.H. Detre, T., “Researchers' Access to Patient Records: An Analysis of the Ethical Problems,” Clinical Research, 32 (1984): 399–403.Google Scholar