Maintaining privacy and the health of the publicBMJ 1998; 316 doi: https://doi.org/10.1136/bmj.316.7141.1331 (Published 02 May 1998) Cite this as: BMJ 1998;316:1331
Should not be seen as in opposition
- Jan P Vandenbroucke, Professor of clinical epidemiology
- Leiden University Medical School, Leiden 9600 RC, Netherlands
By a twist of irony one of America's foremost resources of clinical and epidemiological research has been struck by a growing concern about patient privacy.1 Since the early 1900s the Mayo Clinic Foundation at Rochester, Minnesota, has maintained a medical record system that amounts to a population registry on health and disease.2 Hundreds of clinical, biochemical, and epidemiological research papers have used old records and added new analyses or follow up data. Recent legislation in the state of Minnesota has made such use next to illegal. Minnesota is not the only place where privacy legislation is jeopardising the use of patient data for research. It is time to reassess the terms of the privacy debate.
In response to the Minnesota law the New England Journal of Medicine has devoted no fewer than four pages to a cry from the heart from Rochester.1 The Mayo Clinic Foundation is setting up a heroic effort to obtain “broad informed consent” from all patients for future use of their data. Predictably, this will fall short of the requirements of those who demand specific informed consent for each piece of research—even retrospectively.3 The mere possibility of litigation recently prevented the description of an epidemic of drug resistant tuberculosis …