I decided not to view information about Alzheimer's and Parkinson's because the abnormality they reveal is a genetic variant that you cannot, like, read crossword puzzles to avert. It's just bad news. If I find out that I don't have the variants then all I've done is crossed two variants of two diseases of thousands. It's not worth the spin of the roulette wheel.
Normally this would be revealed by a genetic counselor and context given. Personally, I wouldn't view this information no matter what.
BRCA is another issue. I think BRCA is _very_ important information, since a mastectomy and possible hysterectomy can greatly reduce chances of the resulting cancer. But this information needs to be given with immediate context and guidance, and now how 23andme presents it.
I was also kind of astounded that 23andme doesn't even prompt you whether or not you want to find out if you're a Tay-Sach's carrier or not. That can be enormously significant news. I turn out to have the variant that tends to test false positive, but I was still unhappy to be given that information without my prompt.
These are good examples of information that you rationally choose not to learn. The second part of my question was whether you believe some third party should be able to require that the information be withheld from you even if you want to learn it.
Clearly I do believe that information should be regulated, since I support FDA's ban of 23andme disseminating statistically inconfident yet severe medical information the way they do. Because of the way people react to it, I do not think that this information should be given without genetic counsel.
This is the only case in my life where I've thought that a piece of information should be regulated.
The phrase "information regulation" is deeply scary to me. This is dangerous turf. But I think that this is the right decision at the time.
I decided not to view information about Alzheimer's and Parkinson's because the abnormality they reveal is a genetic variant that you cannot, like, read crossword puzzles to avert. It's just bad news. If I find out that I don't have the variants then all I've done is crossed two variants of two diseases of thousands. It's not worth the spin of the roulette wheel.
Normally this would be revealed by a genetic counselor and context given. Personally, I wouldn't view this information no matter what.
BRCA is another issue. I think BRCA is _very_ important information, since a mastectomy and possible hysterectomy can greatly reduce chances of the resulting cancer. But this information needs to be given with immediate context and guidance, and now how 23andme presents it.
I was also kind of astounded that 23andme doesn't even prompt you whether or not you want to find out if you're a Tay-Sach's carrier or not. That can be enormously significant news. I turn out to have the variant that tends to test false positive, but I was still unhappy to be given that information without my prompt.