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Considering Steve Jobs, Medical Diagnoses and Privacy

Yes­terday morning I wrote a short post on Celebri​ty​Di​ag​nosis​.com. By evening, news broke that Apple founder and CEO Steve Jobs resigned from his position, pre­sumably for reasons of his health.

What’s public, by Jobs’ decision, is that he had a rel­a­tively good, typ­i­cally slow-​​growing kind of malig­nancy in the pan­creas, a neu­roen­docrine islet cell tumor. He informed Apple employees by email about his diag­nosis in 2004, when he was 49 years old. Since then he’s had a liver trans­plant. Pos­sible com­pli­ca­tions of that surgery, or the tumor itself, have led to con­sid­erable spec­u­lation. But little is known about the details of why he took medical leave in January and is stepping down now.

In a pub­lished letter to the Apple Board and Com­munity, he wrote yes­terday: “I have always said if there ever came a day when I could no longer meet my duties and expec­ta­tions as Apple’s C.E.O., I would be the first to let you know. Unfor­tu­nately, that day has come.”

The letter was “short and classy,” in David Pogue’s words, and I agree. I respect Jobs’ decision to keep the details of his medical con­dition private. That’s the thing – and where this is post is heading.

When public figures are open about their ill­nesses, it can be helpful, instructive and even nec­essary. For example, if a political figure, say Fidel Castro or Hugo Chavez or Dick Cheney, with con­sid­erable power develops a cancer or has a stroke or a heart attack or some other serious medical problem, the cit­izens have the right to know that the con­dition of the person they rely on has changed.

Some­times it’s instructive to learn about famous people’s medical stories, as is illus­trated in Barron Lerner’s book, When Illness Goes Public: Celebrity Patients and How We Look at Med­icine. Openness about breast cancer by women like Happy Rock­e­feller, Rose Kushner and more recently Eliz­abeth Edwards (to name a few among many) have helped women move forward, from being ashamed of having BC to under­standing about what it’s like to live with the disease. They helped other women to under­stand this disease, through their gen­erosity of per­sonal stories and experience.

The problem is that in our culture there’s so much openness about medical con­di­tions, indi­viduals may feel com­pelled to tell what’s hap­pening if they have cancer or a recur­rence or some other unfor­tunate medical event. But not everyone wants to do so, nor should they feel obliged.

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