4 ms·

Unfortunately, at least in the current environment, such endeavors would be shut down by "privacy" advocates. I was a student at UC Berkeley when we wanted to

by orijing 15y ago

Unfortunately, at least in the current environment, such endeavors would be shut down by "privacy" advocates. I was a student at UC Berkeley when we wanted to offer every student a chance to sequence their genes. However, because of the efforts of the vocal minority (I certainly wanted to sequence my genes), that was cancelled. I'm afraid of similar cultural artifacts limiting society's advance. I would have loved if everyone got sequenced so we'd have tons of meaningful data to do more genetics research.

Shenglong 15y ago
Don't you just love how ignorance limits scientific progress? I have a similar story about curing Parkinson's with stem cells.
- driverdan 15y ago
  Go on.
rdouble 15y ago
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.
- orijing 15y ago
  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.
  - 0x12 15y ago
    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.
- aptwebapps 15y ago
  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?
baddox 15y ago
Why would privacy be an issue? Unless people are collecting your tissue and sequencing your DNA without your permission, I see no privacy concerns.
pronoiac 15y ago
I'm wary of what would happen if I had interesting genes - didn't some plant genes, found in the wild, get patented? I'm not sure what my due would be, but I'd rather not get sued, at least.

by orijing 15y ago

Shenglong 15y ago

Don't you just love how ignorance limits scientific progress? I have a similar story about curing Parkinson's with stem cells.

driverdan 15y ago
Go on.

rdouble 15y ago

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.

orijing 15y ago
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.
- 0x12 15y ago
  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.
aptwebapps 15y ago
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?

baddox 15y ago

Why would privacy be an issue? Unless people are collecting your tissue and sequencing your DNA without your permission, I see no privacy concerns.

pronoiac 15y ago

I'm wary of what would happen if I had interesting genes - didn't some plant genes, found in the wild, get patented? I'm not sure what my due would be, but I'd rather not get sued, at least.