23andme.com... Anyone Done It?

[motion]

I did some research on privacy before I jumped into this. There are quite a few blogs out there talking about 23andme's service, and privacy implications. This is a pretty good summary, found on one of the blogs:



- Right now, genetic testing is next to useless for insurance companies, even if they wanted to use the results to stratify applicants into high and low risk pools. We just don't know enough about the genotype-phenotype correlations to really make accurate assessments of how most SNPs will influence your health in the long term (with a very few notable exceptions).

- Even if you were to take your information and post it publicly, you would be afforded some protection by the Genetic Information Nondiscrimination Act (GINA). You can read a decent primer on GINA, or go straight to the GINA information for health-care providers, provided by the HHS. Note that GINA does not cover long-term care insurance, life insurance, and disability insurance.

- Some knowledgeable people believe the risk to be very low. George Church is heading the Personal Genomes Project, where an increasingly large group of individuals will be posting their complete genetic information and health histories online. This is intended to further research, but also show that genetic sequencing is nothing to fear. Others are a bit more cautious than Church and remain convinced that the insurance companies will manage to find a loophole and screw them anyway.

- 23andMe has a high incentive to keep your data private, and I'd expect their system to be at least as secure as say, a bank or brokerage firm, on a technical level. If they want to be a player in the burgeoning medical informatics field (and they do), your data will be well guarded and not used for nefarious purposes.

Personally, I wouldn't be worried about 23andMe, and would jump at the chance to get it done if it were less expensive. I'd still be a little hesitant to make my data completely public, as the PGP is doing.

-http://ask.metafilter.com/135748/Privacy-implications-of-23andme

[slakjaw]

Originally Posted by motion

Why?

I don’t want to know. I am not worried about my DNA going to anyone or anything like that. I just do not want to know.

What if the test comes back and says you have 90% chance to get cancer. OK great there is no cure for cancer so what did it really tell me. You could take steps to live healthy but there is still 90% chance you will get cancer, right? I prefer not to know these things.

[motion]

Originally Posted by slakjaw

I don’t want to know. I am not worried about my DNA going to anyone or anything like that. I just do not want to know.

What if the test comes back and says you have 90% chance to get cancer. OK great there is no cure for cancer so what did it really tell me. You could take steps to live healthy but there is still 90% chance you will get cancer, right? I prefer not to know these things.

But there is a cure for a lot of cancer types: Prevention

[turbo6bar]

If this screening helps you prevent a disease, why not?

[einreb]

Originally Posted by turbo6bar

Lotion, how do you feel about the privacy/confidentiality issues?

"Lotion"



to the original question... that's a pretty cool service. I'd be interested to see some sort of outside/independent review of it.

[motion]

Originally Posted by einreb

"Lotion"



to the original question... that's a pretty cool service. I'd be interested to see some sort of outside/independent review of it.

Analysis of 23andMe's Genotyping: High Accuracy of Illumina Platform Confirmed by Comparing Siblings | The Chromosome Chronicles

[M.D. Holloway]

Cancers and the like that you may have a greater susceptality for can be prevented? Hmmm. I would like to know more. CF, MD and MS have genetic links and as far as I know there isn't much you can do if you have those genes.

My wife has RP which has blinded her. There is no cure and no prevention. Our children have a 50% chance of having it. We have not tested them. With RP you can have the gene and never go blind, or slowly go blind over many many years or quickly go blind in a mater of months at anytime in your life.

So, I ask you this. Would you want to know if you had it? Would you want to know if your kids had that gene? Would you tell them?

Tough questions huh? I would love to know your answers because I am struggling with this now...

[motion]

If a cancer is detected early on, there is a much better chance for survival later. Knowing you might be predisposed to a certain type of cancer will make you that much more diligent when it comes to preventative checkups and tests. That seems like a no-lose to me.

Your example, RP. Mike, you're kids are already here, so that part may be a bit late for you to change. OK, so if you know they are carrying the gene, maybe you could guide them in a certain career direction where, God forbid, they do become blind later in life, they would still be able to thrive without eyesight?

Just an example. I'm sure there are a million scenarios where the information would be beneficial.