In this recent article in the Wall Street Journal, we are presented with two sides of a debate on whether there should be a unique medical identifier given to each patient in the U.S. healthcare system.
Both sides agree that this would help record keeping problems so much (compared to the shambles that exist today) that it would vastly improve scientists’ ability to understand and predict disease. But the personal privacy issues are sufficiently worrying for some people to conclude that the benefits do not outweigh the risks.
Once it’s really easy to track people and their medical data through the system, the data can and will be exploited for commercial purposes or worse (imagine your potential employer looking up your entire medical record in addition to your prison record and credit score).
I agree with both sides, if that’s possible, although they both have flaws: the pro-identifier trivializes the problems of computer security, and the anti-identifier trivializes the field of data anonymization. It’s just incredibly frustrating that we haven’t been able to come to some reasonable solution to this that protects individual identities while letting the record keeping become digitized and reasonable.
Done well, a functional system would have the potential to save people’s lives in the millions while not exposing vulnerable people to more discrimination and suffering. Done poorly and without serious thought, we could easily have the worst of all worlds, where corporations have all the data they can pay for and where only rich people have the ability or influence to opt out of the system.
Let’s get it together, people! We need scientists and lawyers and privacy experts and ethicists and data nerds to get together and find some intelligently thought-out middle ground.