DNA sample is getting FedExed tomorrow

[flexagon]

Spit. Spitspitspit. That's me spitting a two-milliliter DNA sample for 23andMe.com to analyze in gruesome detail. Here it is, mixed with DNA stabilizer of some sort.



The 23andMe.com folks say they need saliva instead of a cheek swab because they need a lot of cells, by the way, which is a bit weird since I didn't think saliva necessarily HAD cells in it. The Wikipedia page on saliva says that indeed, it's mostly water, electrolytes, mucus and enzymes, but there also may be "possibly as much [sic] as 8 million human cells per mL", so I am shipping away possibly as many (ahem) as 16 million of my cells. I'm still wondering WHAT cells; maybe some immune-system cells?

I forgot to mention another good reason I have for getting analyzed, and that's Birdie, my biological child. Any genetic condition I have, I could have passed on to her; and so I feel obligated to tell her parents anything of particular note that I find out. We certainly were thinking about genetic quality at the time of deciding to do the egg donation (and decided not worry too much about my father's probable cancer-genes, btw, because V doesn't have much cancer in his family) but this level of knowledge just wasn't available in 2000. Mind you, I'm not saying this good reason has anything to do with my actual decision, merely that it is a good reason that happens to agree with my unreasonably strong need to know.

Had a brief talk about this with some people over the weekend (one a doctor, one currently in med school); the one who was a doctor says that the specific cancers that wiped out my grandparents (colon and esophagus) are theoretically not hereditary. It's amazing how much I don't care about that little tidbit of information, at this point. I'm going to be finding out my REAL probabilities soon.



One more thing -- humor me. When I first posted about 23andMe.com, I really thought everyone and their dog would have something to say about it. If you didn't comment and/or don't think this is interesting, why not!? I'm really missing something here. I understand people are thinking deep thoughts about the right not to know their genetic information, but you can't un-know the fact that you COULD now know it. Either you don't have $1009, or you're now choosing not to learn things about yourself, and I'm probably the one who put you in that position (yeah, it was a top news item at Wired for a couple of days, but that was after my post). I think even that much is fascinating.

Comments

[silver-spork.livejournal.com]

I worked in the general area of DNA sequencing and SNP (single nucleotide polymorphism) detection during graduate school (1998-2003) and there is still so much that we just don't know about specific causalities beyond some SNP locations for Alzheimer's and for BRCA1/BRCA2, two areas that do point to a bleak prognosis for breast cancer patients.

Although they will be scanning ~600k areas of your DNA, I find it hard to believe that their final analysis will yield much in the way of concrete evidence. I'm not sure if $1000 is a fair price for generalizations. Then of course, there are the privacy issues.

I did a little poking around and found this:

"We may use Genetic and Phenotypic Information to conduct 23andMe-authorized scientific research and development. Any Phenotypic Information you provide is done on a voluntary basis. We may provide third party organizations access to this information for scientific research, but without your name or any other Account Information."

Without reading the full privacy disclosure (I haven't done that), this statement is extremely worrisome. It sounds as though they will attempt to protect your phenotypic information through making your disclosure voluntary, but that your genetic information will be available to 23andMe and third parties.

As we do get better at predicting genetic factors for everything from cancer to poor eyesight, our genetic information will become more and more valuable and the use of this information will have more and more serious ethical considerations. The Senate is trying to pass non-discrimination laws covering genetic information (GINA Act of 2007), so far without success.

Sorry to be Capt. Bringdown, but that's how I see it.

[flexagon]

It's pretty fascinating how we can look at the same facts and get an entirely different picture. I'm happy to have someone weighing in who worked in the field, though, so thanks for the thoughtful comment. I'll give details later on how much I find out -- based on articles I've read by people who have had the analysis done, I think I, personally, will be happy with having spent $1000. Generalizations are a lot better than the nothing I have now. :)

there is still so much that we just don't know

We may use Genetic and Phenotypic Information to conduct 23andMe-authorized scientific research and development... worrisome...

I find these two sentiments together pretty worrisome... they set up a pretty self-perpetuating situation, no? If people are worried about being part of studies, they won't happen and the body of knowledge won't grow. That doesn't sound like a dynamic I want to be part of. Without rereading the privacy statement, I do think I remember that all sharing is opt-in, but I just find that exciting, a chance to be part of the growth of this branch of science. (I don't have to give them any phenotypic information, and I might not; and if indeed the genetic stuff will be shared but anonymously, that's fine). SOME people have to feel the way I do, or the studies can't happen.

It's funny, I've often joked that I was born without the privacy gene, but with people giving me serious talks about how genes are not destiny, it doesn't sound as funny tonight. It's true, though, that if there was a privacy-sensitivity gene, I wouldn't have it. I wonder sometimes if it has to do with being somewhere on the geek/Asperger's/autism spectrum. I read somewhere that a few other "big concepts" like patriotism tend to leave Aspies cold...

As we do get better at predicting genetic factors for everything from cancer to poor eyesight, our genetic information will become more and more valuable

Right, which is why it's so cool that my genome will stay online so that new research can be evaluated as it happens to apply to me. I know about GINA, and find it encouraging that legislation related to this stuff is already in the Senate; it takes time to get the right laws through, and I'm not even familiar enough with GINA to be sure it's the version of the concept I'd be most in favor of, but clearly the lawmakers are working on something about genetic non-descrimination. We don't seem to be heading in the direction of Gattaca just yet.

Sorry this is so long; I couldn't sleep and finally decided to give up on trying for a while.

[silver-spork.livejournal.com]

Thanks for your comment. I have no problem with donating material for specific research. Many people allow their tumors to be used for genotype/phenotype information, and lots of Alzheimer's/Parkinsons/ALS patients donate their bodies to science for that specific research. I realize that 23andMe may speed research in other areas, but that will depend how much they will charge for access. Very few academic labs can afford a $10k/yr license (ballpark for this type of access in 2003).

My problem is the wholesale collection and storage of DNA and genomic information without a clear picture of how this information will be used (and profited from) and without any idea how this type of information could be abused in the future. Gattaca is still a fable, but discrimination is not.