Privacy concern for your genome or other medical data is no small matter in the USA.
I used to work on a research program for electronic medical records. At some point I realized that virtually no doctor was interested in what I was working on. However, HMOs and insurance companies had great interest. I came to conclusion the main application of my work would be to deny insurance to those with pre-existing conditions.
Sure enough, years later I had to apply for my own insurance and was denied because I had once been on high blood pressure medication for a month.
Genetic information is worse than a medical record. One can find out they may be predisposed to Parkinson's disease. There is little a person can do with this knowledge. However, an insurance company can definitely use it to deny coverage. It's like a credit rating that can never be repaired.
That's true, but if you have full control over who can see your information (i.e. "I allow it to be anonymized and used for genetics/cancer research in exchange for information about myself, for myself"), it's not a problem. I just get frustrated when the will of the vocal few override the welfare of the silent majority.
You really didn't understand the GP I believe. The 'silent majority' are the people who would suffer from this, they won't benefit. A select few will profit (vastly) from being able to sell insurance to those who don't need it and withhold it from those that do.
You having control over your information is a pipe dream, try facebook for starters and now think 'all my medical information, past, present and future' instead of your friends graph.
Privacy advocates tend to be a bit more educated about these risks than the general public and maybe know a thing or two about what has already transpired.
And for the record, you can't anonymize a genome, it is you.
Not arguing that was the case, and it may remain the case for things like employment, but when the new health care legislation comes into effect (and if it sticks) won't that cease to be a problem?
I used to work on a research program for electronic medical records. At some point I realized that virtually no doctor was interested in what I was working on. However, HMOs and insurance companies had great interest. I came to conclusion the main application of my work would be to deny insurance to those with pre-existing conditions.
Sure enough, years later I had to apply for my own insurance and was denied because I had once been on high blood pressure medication for a month.
Genetic information is worse than a medical record. One can find out they may be predisposed to Parkinson's disease. There is little a person can do with this knowledge. However, an insurance company can definitely use it to deny coverage. It's like a credit rating that can never be repaired.