A day after breaking an almost year-long silence on a medical condition that had affected the way he speaks, Google co-founder Larry Page said Wednesday that people should be more open about their medical histories.NY Times reporter Gina Kolata reports:
"I just disclosed yesterday my voice issues, I got so many thoughtful emails from people and advice," he said answering an audience question at the Google I/O developer event in San Francisco. Page said he had originally thought his own medical information should be very private, but the response he got from his blog post caused a rethink.
"At least in my case I feel I should have done it sooner and I'm not sure that answer isn't true for most people, so I ask why are people so focused on keeping your medical history private?"
But geneticists nationwide have gotten a few rude awakenings, hints that research subjects in fact could sometimes be identified by their DNA alone, or even by the way their cells were using their DNA. The latest shock came in January, when a researcher at the Whitehead Institute, which is affiliated with the Massachusetts Institute of Technology, managed to track down five people selected at random from a database using only their DNA, ages and the states in which they lived. And he did it in just hours. He also found relatives — a total of close to 50 people. ...Advancing technology and Obamacare may make medical privacy obsolete.
With so many questions about the privacy and security of genetic data, researchers wonder what research subjects should be told. Leaks and identification of study subjects will never be completely avoidable, said George Church, a Harvard geneticist. And as much as investigators might like to find a way to keep genetic data secure and private, he does not think there is an exclusively technical solution.
“If you believe you can just encrypt terabytes of data or anonymize them, there will always be people who hack through that,” Dr. Church said.
He believes that people who provide genetic information should be informed that a loss of privacy is likely, rather than unlikely, and agree to provide DNA with that understanding.
I am wondering what the practical consequences would be if everyone's medical, psychiatric, and genomic info were put in a public database. I do not see how I would be personally harmed. Maybe even my insurance rates would go down, as a lot of medical privacy is just hiding data from insurance companies. If the companies can operate more efficiently, then there would be an average benefit to us.
Medical privacy is going to be very expensive. I haven't formed a definite opinion. I want to see the costs and benefits. Nobody is telling me either.