Health and the Right to Privacy
Starr, Paul, American Journal of Law & Medicine
Health and the Right to Privacy^
When Louis Brandeis and Samuel Warren introduced the phrase "the right to privacy" as the title of an article in the Harvard Law Review in December 1890, they were primarily concerned about a right of privacy from the news media.l "The press," they wrote, "is overstepping in every direction the obvious bounds of propriety and of decency.2 Gossip is no longer the resource of the idle and of the vicious, but has become a trade, which is pursued with industry as well as effrontery. To satisfy a prurient taste the details of sexual relations are spread broadcast in the columns of the daily papers."3
Although you could hardly say that Brandeis and Warren's concerns were out of date, their article offers us a mixed precedent for any discussion of privacy and information today. To be sure, their idea of a right to privacy has proved to be enormously influential; it has even been extended to areas of law and policy, such as contraception and abortion, which they did not anticipate. In this general sense, their case for a right to privacy has been vindicated. But the specific cause that Brandeis and Warren took up must be judged largely to have failed. Does the news media today pursue gossip with industry? Gossip is an industry. Are "the details of sexual relations . . . spread broadcast"? They are-and with scant fear of legal repercussions. In the century since their 1890 article, the law has not followed the path that Brandeis and Warren proposed. Where claims of privacy have conflicted with the First Amendment, the U.S. Supreme Court has, with only rare exception, come down on the side of the First Amendment. It has given higher priority to the public's right to know than to the right of individuals to control access to information about themselves.
There is an irony about this result. For it was Justice Brandeis himself together with Justice Holmes who in their dissents in the 1920s paved the way for the expansive interpretation of the First Amendment decades later in Sullivan v. New York Times,4 Time v. Hill,5 and a series of subsequent cases that effectively subordinated privacy rights to the First Amendment.
This history holds a lesson for us. Privacy is not an all-purpose trump card; it is not the only value implicated in the rules governing the control of information. There are other legitimate interests as well-different ones, to be sure, in the case of health data from that of news. Patients have a strong interest in preserving the privacy of their personal health information, but they also have an interest in medical research and other efforts by health care organizations to improve the medical care they receive. As members of the wider community, they have an interest in public health measures that require the collection of personal data.
Fortunately, these interests in medical research and public health can be pursued with far less jeopardy to privacy than upholding the First Amendment in the case of news. For unlike the news media, medical research and public health are not interested in disclosing individual identities to the public. Insofar as they need individually identifiable health information, it is as an intermediary step in the production of knowledge or protection of health. In other areas, such as the use of medical records for law enforcement, the right of privacy must be judiciously balanced against other values in finding the appropriate policy. But at least with respect to medical research and public statistical data, there ought to be not simply a balancing of interests, but a fully satisfactory way of protecting both privacy and health; and thus it would be tragic if, in the effort to safeguard privacy, we were to adopt laws and regulations that jeopardized research and data by degrading their quality or raising their cost to prohibitive levels.
The goal of protecting privacy in health care underlines another limitation of the conception of privacy as Brandeis and Warren introduced it. …