Ok, this really only attempts to start answering the first of those questions, not the second.
Tomorrow, a cool new community that I am part of will be launching over at 23andMe: XX Pregnancy. (No, I'm not pregnant again.)
23andMe is a company that provides individual DNA testing to ordinary people, and helps them to understand the information they've been given. In addition, they hope to influence genetic research, in part by creating a community of people who can compare genetics and other health or physical characteristics that may be influenced by their genes.
I know.
What's a privacy policy wonk like me doing giving some corporate entity my spit and subsequently a complete record of all of my currently available genetic information? Isn't that a little bit Gattaca?
Maybe. I won't tell you I'm not afraid of that.
But their privacy policies and practices give me control over who has access to my personally identifiable genetic information without a court order (or similar appropriate legal demand that they provide the information), and I can delete my personally identifiable information from their database at any time.
In fact, I think they have a very strong Privacy Statement that includes an easy to read, easy to understand summary, and they don't use any language that I consider tricky or excessively legalistic.
Of course, I didn't get genotyped just because the genotyping company had a good privacy policy.
I mainly did it for two reasons, one selfish, and one maternal.
The selfish reason is because I was curious and a little bit scared. My maternal grandfather is dying, and while "cause of death" may not read "Alzheimers Disease" that is certainly what has given him the quality of life that I most dread over the last decade or more.
I wanted to know whether or not I have an enhanced genetic risk of getting Alzheimers. Or breast cancer. Or any other genetic disease.
Some of that information isn't yet available on 23andMe. Right now, they can only tell you if you are at increased risk for 10 diseases associated with genetic markers -- things like diabetes, Parkinsons, and age-related macular degenerative disorder. They can also tell you if you are a carrier for some of the breast cancer genes, sickle cell, or cystic fibrosis. The company has assured me that Alzheimers information will be available soon.
You might not want to know. That's totally understandable. I wanted to know. I still want to know more.
The less selfish reason is for Noah and Josie. They can only have so much information about their biological heredity -- what we know about their biological father is probably all we will ever know. He was a big guy, athletic, looked somewhat like Mark McGuire, and he didn't know of any serious health issues within his family.
That's good info, but obviously limited. And we don't have any information about whether, for example, his sister/mother/grandmother developed breast cancer after he quit being a sperm donor.
On the other hand, 23andMe gives me the opportunity to give Noah and Josie all of the genetic information available about me. And potentially about each of them, how they differ from one another, and how they differ from me.
So when they begin to ask, "Who am I?" there are places I can point them to for information.
"Why am I here?" is both harder and easier. I don't have a big metaphysical answer, but I anticipate starting the answer like this, "You are here because This Mommy and I wanted you to be here, with all of our hearts. And we were very, very, lucky."
This post was sponsored by 23andMe. Starting today, you will also be able to find me blogging in their pregnancy community.
Research breakthroughs are only possible if enough women participate by answering surveys-- if you are currently pregnant or have been pregnant before please visit http://www.23andme.com/pregnancy and complete a short survey.
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