Issue No.03 - May-June (2004 vol.2)
Published by the IEEE Computer Society
DOI Bookmark: http://doi.ieeecomputersociety.org/10.1109/MSP.2004.12
Certainly the medical community, struggling with new HIPAA rules governing medical privacy, doesn?t seem to have managed to provoke an engagement from the computer-science and software-engineering research community. This is unfortunate for several reasons: our community has the ability to make a unique and valuable contribution to the discussion, and now is the time to resolve conceptual issues and design decisions so that the next generation of infrastructure can accommodate the emerging requirements.
A few years ago I had lunch with Ray Cornbill, a friend of mine who is a distinguished professor, though not a physician, at a major medical school. Ray's unique sideline is as an international rugby coach. We chatted about our work and compared notes on current events. As we finished our lunch and prepared to depart, he made a remarkable statement: "I'm going over to the radiology practice to pick up my old x-rays."
What did he mean by that? It turns out that the radiology lab that had taken his x-rays for the past couple of decades decided that it could no longer afford to keep the old ones around. Because he was a well-known professor at an affiliated medical school, a staff member had given him the heads up about the imminent disposal. Why did he care? Well, before becoming a rugby coach, he was an active rugby player for many years. Rugby is, shall we say, a rather vigorous sport, and he had suffered several injuries to various parts of his musculoskeletal system. His x-rays represented his physical history; he felt strongly that losing this history would make it harder for his doctors to care for him in the future, so he wanted to collect them before they were discarded. Notice that he wasn't endangered by disclosure of confidential information, but rather by the loss of valuable historical data.
You go to a doctor or a hospital for an x-ray, but did you ever wonder who "owns" that x-ray? Your doctor ordered it and analyzed it, the radiologist made it and stored it, your insurance company paid for it—but it's a picture of your body and is probably of the most value to you. But possession is nine-tenths of the law, as they say.
More than who has ownership claims, however, this question raises the issue of what ownership is. If we were to express the rights of ownership as methods in C++, they'd have names like these: Copy. Move. Destroy. Read. Modify. Transmit to someone else. The lab invoked its "ownership by possession" right in planning to destroy the x-rays. This is not entirely unfair; after all, the lab had spent money for years to store them and it is reasonable for them to want to stop spending money without a return. But in doing so it ran up against others' unarticulated but valid ownership claims.
Lately, much discussion in our community has focused on digital rights management (DRM), which seems mostly an examination of copyright law and how it might change in light of current technological advances. The debate has grown heated as the ability to use technology to recast the terms and conditions of, for example, the sale of a book or recording have penetrated the awareness of both sellers and buyers. As the likes of Lawrence Lessig of Creative Commons and Clifford Lynch of the Coalition for Networked Information point out, the doctrine of first sale can be overthrown technologically. There might come a day when the fact that you've paid for a book doesn't mean that you can lend it to a friend or even reread it years later. This has huge implications for libraries and educational institutions, as well as for people who ever replace their computers or DVD players. These important issues are currently being debated in a wide range of fora.
What is most troubling, however, is that the only model that seems to get serious attention is wrapped around broadcast-like models of distribution—models with a few producers and many consumers, such as books, music, movies, cable TV, broadcast TV, and radio. Questions such as rights management for things like x-ray images and medical records in general don't attract much attention. For these sorts of intellectual property, we have to think more deeply about rights such as the right to destroy, the right to disclose, to publish or otherwise render unsecret, and others. Some work has been done in this area, such as for items like news photos, which tend to distinguish between the rights of celebrities and those of the rest of the population. The owners of important buildings have begun to assert rights to pictures that professional photographers take of them. And the performing arts community has established, by contract and practice, a system of fractional rights (primarily for managing royalty streams) that has some interesting characteristics.
Of course, this debate is not just about x-rays. It's about any of your information sitting in a folder in your doctor's office or that your bank has on file. Certainly the medical community, struggling with new HIPAA rules governing medical privacy, doesn't seem to have managed to provoke an engagement from the computer-science and software-engineering research community. This is unfortunate for several reasons: our community has the ability to make a unique and valuable contribution to the discussion, and now is the time to resolve conceptual issues and design decisions so that the next generation of infrastructure can accommodate the emerging requirements.