Academic journal article Proceedings of the American Philosophical Society

Face to Face with "It": And Other Neglected Contexts of Health Privacy1

Academic journal article Proceedings of the American Philosophical Society

Face to Face with "It": And Other Neglected Contexts of Health Privacy1

Article excerpt

"ILLNESS has recently emerged from the obscurity of medical treatises and private diaries to acquire something like celebrity status," Professor David Morris astutely observes.2 Great plagues and epidemics throughout history have won notoriety as collective disasters; and the Western world has made curiosities of an occasional "Elephant Man," "Wild Boy," or pair of enterprising "Siamese Twins."3

However, it is something new that fame is routinely achieved by a parade of commercial medications (like Prozac and RU-486); diseases (like bipolar disorder and autism); and ill individuals (like Philadelphia's own Butch Quinn, who received an experimental mechanical heart transplant, and Jesse Gelsinger, who underwent gene therapy and died). Publicized illness adds a new order of celebrity to men and women who have already achieved fame. Early onset Parkinson's added public interest to the life of television actor Michael J. Fox, much as AIDS added fascination to basketball superstar Earvin "Magic" Johnson; and schizophrenia added interest to the life of Nobel laureate John Forbes Nash.

Illness has gained celebrity, and Americans have become more open about personal health matters. Just a few decades ago, one would have been expected to share medical problems sparingly, and mainly inside the circle of intimate family and friends. It was considered uncouth by the middle and educated classes to prattle on about poor digestion, arthritis, menopause, and sexual dysfunction. Yet, in a wide variety of social and professional settings, talking about personal health is perfectly acceptable today. Urbane young adults freely chat about their carpal tunnel syndrome, migraines, and antidepressants.

Today, when serious illness strikes-whether cancer, multiple sclerosis, Alzheimer's, or AIDS-it is common to share the news with friends, neighbors, and employers; publishing an account of a medical ordeal in a magazine or newspaper or on the Internet is also commonplace. Moreover, numerous popular reality television programs follow the course of real people's hospital care. Patients voluntarily Webcast childbirth, cosmetic procedures, and cancer surgery.

PRIVACY ISN'T EVERYTHING: THE BENEFITS OF HEALTH DISCLOSURE

The new openness about health concerns has public health and private health benefits.4 For example, freely sharing health information with family and friends makes it easier for them to serve as appropriate caregivers. Freely sharing health information with nurses and doctors makes it possible to receive appropriate medical care. Sharing health information with employers makes it possible to receive important disability accommodations and sick leaves. Sharing information with managed care administrators and insurance companies can be unpleasant, but useful and necessary because they pay the bills, and need to do so accurately and efficiently. The same is true of sharing health information with government administrators who process applications for, for example, Medicaid, or who administer public health services. In the case of children and students, sharing health information with schools is imperative for the design of appropriate, fair, and safe programs of instruction. Schools need to know about vaccinations, allergies, hearing and sight losses, learning disabilities, and emotional disturbances.

PRIVACY STILL MATTERS

Medical openness is beneficial, and a willingness to share medical data is a practical necessity. But medical privacy has not lost all of its value and appeal. Indeed, a preference for privacy is a familiar dimension of the experience of ill health. When we are encountering ourselves as unwell or dying, many of us seek to conceal the fact and extent of our problems from others. We get picky about who knows what, about when and how our health information is passed along.

Although as a society we have grown more open about health matters, deeply felt preferences for privacy remain. …

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