INFORMATION POLICY FOR THE U.S. HEALTH SECTOR:
ENGINEERING, POLITICAL ECONOMY, AND ETHICS

CONCLUSION

Gostin (1994) notes that, given the magnitude of the social benefits, "[i]t is not surprising … to find that many advocates of a health information infrastructure simply assume that collection of ever-increasing health information, in ever more efficient ways, is inherently a social good." Given the magnitude of the personal costs that can attach to information abuses, and the strong value that US citizens place on privacy, it is also not surprising to find many privacy advocates who are deeply skeptical of health care’s information aspirations. Yet progress in medicine, for both personal and public health, has always depended critically on information from and about individuals. It is safe to assume that it will continue to be essential to the evaluation of new technologies and treatments, and to identify and respond to new health threats. Decisions about information policy are thus critical ones, both for the health of the US population and that of populations around the world who leverage the contributions of our biomedical research.

Almost all the various interests agree that Federal legislation is needed, to bring uniformity of protections and standardize practices, lest we build an health information infrastructure that is neither fair in its impact nor efficient in its functioning. But what will be the details of that law and the regulations that support it? It is in the nature of crafting policy in a Madisonian system that a proposal capable of satisfying the majority must often contain elements unsatisfactory to each of the competing interests. For health information policy, legislative success will require a willingness to compromise on the details of preemption, the precise structure of consent, the procedural hurdles that attach to information access of various types, and a hundred other lesser elements that will condition the day to day flows of information within the system.

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