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Disclosure for Research
The benefits of medical research are widely known and agreed upon. It is less clear that personally identifiable information should be used for research without patients' consent.
According to the U.S. Surgeon General's December 1999 report on mental health, some states allow researchers access to confidential patient information if it is impracticable to get individual consent and if the research has been approved by the state. Though the intentions behind this are surely good, this is a major inroad against patient control over medical information.
The U.S. Department of Health and Human Services provides a system for protecting personally identifiable information collected through research, called "certificates of confidentiality," but this fallible system is no replacement for individuals' power to control their personal medical information.
Rather than institute a system where patient information is used without consent but protected in ways designed by government bureaucrats, the nation's research bodies and institutes should seek informed consent for research from all patients at the time of treatment, notifying them of the protections their information would receive if used. This would allow research to go forward without rending control of private information from patients.
Office of Human Research Protections Web site, U.S. Department of Health and Human Services
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[updated 12/28/00]
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