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Engaging Privacy and Information Technology in a Digital Age
tions to the principles established. One such exception, having to do with the ability to release information when it is for the direct therapeutic benefit of the individual, is noted above. In addition, the guidelines recognize that legal requirements from law enforcement or public health agencies sometimes require the release of personally identifiable information without the consent of the individual. In addition, information can be released if it is released in a form that allows only statistical study and not the identification of the individuals whose data are released (Box 7.2 addresses this topic in more detail). Finally, the guidelines allow the release and use of such information that would otherwise be in violation of the guidelines if that use has been approved by an agency (such as an institutional review board) that has followed some well-defined, publicly accountable process of review.
The nuances in the Ethical Force principles echo the complexities of the balance between medicine as a business, as a service to individuals, and as a science. The need to share information freely with other medical professionals for the therapeutic good of the patient is a clear reflection of the overriding concern of treating the patient, along with the specialization in and collaborative nature of current medical practice. The inclusion of sharing information with insurers to allow payment for the treatment received reflects the business aspect of medicine. But the exceptions for access in accordance with the law reflects the history of public health in this country, where laws have been passed that recognize the need to violate the privacy of the individual in cases where the health of the general public is put at risk. Finally, the ability to override the privacy of the individual if allowed after review by a publicly accountable board ensures the possibility of using information in medical records for the purpose of scientific studies.
In most cases, the normative preferences of many individuals would allow some consideration of the balance between the privacy of the individual’s medical information and the advances in scientific knowledge possible for society if that information is available to researchers. But this is not a trivial issue in the medical domain, and the issue can be put quite starkly: If it weren’t for prohibitions on access to information due to privacy concerns, it might be possible to help many people live longer and more healthy lives. Determining what portions of individual information are acceptable to protect or distribute then becomes a critical issue.
To illustrate, consider the issue of privacy as it relates to researchers obtaining personal health information. Using the anchoring vignette approach, a possible survey question might be, During [your/“Name’s”][most recent] hospital treatment, how much privacy did [you/she/he] have frommedical researchers? Here are a number of possible vignettes: