impossible without the increased power of information-processing equipment, continues to open new areas for the collection of data about each of us that has the potential to aid in the prevention, diagnoses, and treatment of disease as well as to increase the knowledge of medical science concerning the genetic components of health and longevity. However, the possibilities for the abuse of such information are immense and of great concern to those who want to ensure the privacy of personal health information. Although the technology for obtaining this information is being developed rapidly, we have yet to answer the important questions of who should have access to that information and for what purposes—and the longer such questions go unanswered, the greater the long-term risk of irreversible consequences.

7.3
ADDRESSING ISSUES IN ACCESS TO AND USE OF HEALTH DATA

This section examines four approaches to addressing the challenges posed by questions regarding access to and use of individuals’ health and medical information: industry self-regulation, legislation and regulation, consumer/patient awareness, and official advocacy. Of course, these are not necessarily mutually exclusive, but we provide examples from each to demonstrate the variety of strategies being explored in this space.

7.3.1
Industry Self-regulation

A direct attempt to deal with issues about the privacy of medical information is the Ethical Force program of the American Medical Association (AMA),2 which lays out principles for the ethical treatment of patients and information about those patients. In addition, the program seeks to formulate performance measures to enable evaluation of whether or not those principles are being followed.

As would be expected from a program staffed by and directed toward professionals in the health care industries,3 the Ethical Force program reflects a keen awareness of the tensions and requirements of

2

Ethical Force Program, Protecting Identifiable Health Care Informationl Privacy: A Consensus Report on Eight Content Areas for Performance Measure Development, American Medical Association, December 2000, available at http://www.ama-assn.org/ama/pub/category/7726.html.

3

The Ethical Force program is intended to apply to every individual or organization that has access to or uses identifiable health care information. However, the primary constituency of the AMA is physicians, thus leaving open the question of comparable efforts by professional organizations related to nurses, laboratory technicians, hospital administrators, and so on.



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