By the time the third doctor walked into the genetic counselor's gray, windowless office, I knew what they were going to do. They were going to measure the circumference of my head.
My counselor had pulled out the measuring tape, and I just talked and talked. "Look, it's going to be big," I said. "I'm Irish Catholic. I have big hair. I wore a size-large men's hat when I was twelve years old. Most relationships have involved boyfriends saying sweetly, 'No, your head isn't that big!'"
For doctor No. 3, I took a different tack as he measured my head. "Have you seen Conan O'Brien?" I asked. "Irish folks have gigantic heads. It's why there's a lot of Irish actors." He measured my head, got the same result as before, 24 inches, and left with a wave.
The day I went to the genetic counselor was the moment of truth, a cap on what had been about two anxious years of doctor after doctor: needle pokes, blood work, mammograms, and the clang-clang-clang of lying on my stomach in the MRI machine, boobs hanging down. All this work, and I never quite got a clean bill of health. I kept having doctor's appointments.
And here at the genetic counselor's office, they had vials of my blood, and they were going to tell me whether I had tested positive or negative for a rare genetic disorder. I had made the mistake earlier of looking it up on Google Images, where the disorder seemed to be inextricably linked to some of the most horrific medical pictures I'd ever seen.
The genetic counselor was short and Russian, with curly blonde hair that looked like ramen noodles. I made a lot of bad jokes. I told her about the horrors of the Internet, and how, if this was a genetic disorder, then that would kind of make me a genetic freak, right? My husband already had type 1 diabetes, which is rare, and maybe I would have something rare, too?
Her flat response, delivered in a gentle Russian deadpan: "In five years we're all going to be genetic freaks."
She was correct. The Human Genome Project, which mapped and identified the DNA that makes up the human genome, was completed in 2003, at a cost of $2.7 billion. Now, after a precipitous drop in the cost to map an individual's genome, our genetic secrets are accessible to anyone willing to pay $200 dollars and spit into a slim plastic tube for 23andMe. Yet the thing is, when you pay money to 23andMe, you're choosing to find out your genetic code. I had stumbled across my genetic story as doctors saw an abnormality and were looking to find an explanation.
It's clear that I am on the front lines of a coming battle. We live in a time where anyone can access their genetic information, but even though the technology is available, it is not something that has penetrated our collective consciousness. But it should, because: we are all genetic freaks. When genetic information is available, who can have access to it, and what decisions can they make about your life? The privacy of this information is something that we need to legally protect for ourselves in the future.There is a bill currently in progress in the House of Representatives, H.R. 1313, that should make every American, every person with a genetic code, nervous. It's otherwise known as the Preserving Employee Wellness Programs Act. And it would empower companies to get employees' and their relatives' genetic information through workplace "wellness programs." This law could lead to a future where people cannot get health insurance because one DNA sequence implies that they could possibly get an expensive disease in the future.
Think of the genome as a 500,000-page novel. There are clearly going to be some spelling errors in that novel. Some of those errors might change the entire meaning of the book: a character might get "billed" instead of "killed," while others are things like "teh" instead of "the." Genetic abnormalities, and we all have them, run along those lines. Right now, they are all considered risks. And companies do not want to pay for the risk that your "teh" misspelling will end up costing them an additional million dollars in health insurance.