Steve Jobs and your health privacy

When a dear friend got AIDS, back in the mid-1980s, he never told me. I was told he died of cancer, and only later learned the truth.

When my father in law got cancer a decade ago, he only told his immediate family. No one else knew his cause of death until he died.

These were private choices. When must they become public choices?

The case of Apple chairman Steve Jobs represents the edge of that argument. The SEC is now looking into what Apple directors knew of Jobs' liver cancer, when they knew it, and whether they violated any regulations in not disclosing it.

When I broached the subject at ZDNet Healthcare last month, suggesting Jobs lied about his condition and had an obligation to disclose the fact he might die, a firestorm resulted. Some 438 talkbacks came in. Many were angry. One person e-mailed a death threat. (At last report I'm still alive.)

The fact is that, while Steve Jobs is controversial, he is personally and politically popular. This shields him from a lot of criticism.

What does this have to do with more general issues of health care, technology and privacy?

Plenty.

It means the further you go in life, the less health privacy you can have. If Barack Obama had sarcoidosis, the respiratory disease that helped cause the death of comedian Bernie Mac last year, we would expect to hear about it.

Similar rules apply to the leaders of public companies. They are using money from the public market, from ordinary citizens.

Those citizens have a legal right to know about material risks to their investment. The possible (even likely at some point) death of the Macintosh's father (builder of Pixar and i-everything) was, I thought, such a risk.

The more public you are, the more disclosure is required of you. And we need to take those rules seriously. Apparently we didn't take them seriously enough in the case of Bernie Madoff. Nor of AIG and the other public companies whose fall precipitated our current economic crisis.

Michael Jackson, on the other hand, had no such duty. Our interest in his death is prurient, although his promoter perhaps had a right to know more than he did, as a matter of ethics if nothing else.

If you are not the head of a public company or in the public eye, however, we assume you have an absolute right to health privacy. This is the concept behind the HIPAA law, which controls who can access your health records, whether they are on paper or made of magnetic ink.

It is this understandable need for privacy, however, that has kept health IT decades behind the rest of the computing world. Health IT is filled with proprietary code and corporate silos right out of the 1970s, and it may take more than the $19.8 billion in the HITECH part of the Obama stimulus to break those silos down.

My own view is that reducing the incentive for people to pry -- the health ratings through which insurance can be priced beyond your reach or taken away -- will reduce that paranoia.

But not for the famous.

The good news is that insurers have already offered to eliminate ratings in negotiations concerning health reform, and it will almost certainly be part of any package that passes Congress.

Most of us will then be able to share data with anyone, or withhold it, without fear.

Reducing fear is what health reform, and health IT reform, is all about. It's about giving us all the control Steve Jobs has over knowledge of our condition, and placing any obligations to disclose it to the side.

This post was originally published on Smartplanet.com