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.
Links:
Office of Human
Research Protections Web site, U.S. Department of Health and Human Services
Comments? comments@privacilla.org
(Subject: ResearchDisclosure)
[updated 12/28/00]
