insurance debate concern whether or not access to medical care is a basic right that should be guaranteed for all. Those arguing for the privacy of certain kinds of personal health information (at least with regards to denying access to health insurance companies) tend to believe that health insurance is a requirement for access to medical care, and that such access is a basic need that should not be denied to anyone. The insurers, on the other hand, see health insurance as a product being offered by profit-making companies, which can obtain an adequate return on their investments only if they are able to set rates based on the future risk calculated on the individual being insured. If this risk is too high, then the individual can be denied coverage, or given coverage only at very high prices.

From the standpoint of an individual wondering about providing personal health information, the relevant issue is a matter of privacy. That is, given the lack of national consensus on whether or not health care is a basic right, his or her only decision—as an individual—is whether or not to provide information that might ultimately result in the denial or excessive pricing of health care services. But at the policy level, there is in addition to the debate over privacy another debate about the right to and the mechanisms for access to the health care system in this country. The latter debate is important and is being discussed in many venues. However, these two debates should not be conflated.

The addition of DNA information to the personal health information of an individual creates complexities of a different order. Indeed, sensitivities have arisen in recent years due to the possibility—indeed the high likelihood—that medical records will soon contain increasing amounts of information about a person’s DNA.

The expected benefits of DNA information are large, because it can be used to predict the probability of future disease in an individual or the success of any given treatment for that individual. But DNA information can be extraordinarily revealing about a person’s medical predispositions. Perhaps more significantly, the DNA information of an individual reveals genetic truths (and secrets) not just about that individual, but also about his or her relatives—a dimension much less present for other kinds of personal health information. This is not to say that DNA information is necessarily more sensitive or more deserving of protection than information about an individual’s HIV status, for example. But DNA information and to a much lesser extent familial history raise the question of the party or parties that should be identified as the providers or the owners of such information, and therefore whose interests are compromised when an individual chooses to release “his” or “her” DNA information.

As an illustration, consider that it is controversial today to base coverage decisions on conditions beyond an individual’s control; such a case would surely involve DNA information as an instance. Consider also the implications that an individual’s father or child might be denied medical coverage on the basis of the individual’s provision of DNA information.

over, the trend toward increased collection of medical data, coupled with increased sharing of that information for a multitude of purposes, is accelerating. The vignettes given above, ordered from most to least protective of privacy, help to provide a context that is relevant for informed decision making about what level of privacy is acceptable or required in the medical domain.

The recent mapping of the human genome, which would have been

The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement