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.
