It is hard to quantify the impact of ‘role-model’ celebrities on the acceptance and uptake of genetic testing and bio-literacy, but it is surely significant. Angelina Jolie is an Oscar-winning actress, Brad Pitt’s other half, mother, humanitarian, and now a “DNA celebrity”. She propelled the topic of familial breast cancer, female prophylactic surgery, and DNA testing to the fore.
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My friend Misha Angrist, a former geneticist and the author of Here is a Human Being At the Dawn of Personal Genomics, answers some of my questions about DNA research at The Awl.
Holy crap, Misha, you’re making your entire genome public! Are you nervous?
It’s already done. All of my data are here. Frankly I don’t think anything in my DNA could be as embarrassing as this kelly green shirt that continues to taunt me from the interwebs.
I spend a lot of time worrying about the long-term consequences of opening the Pandora’s box just by joining 23andMe.
Hmmm. What is it you’re worried about exactly?
Well, in addition to being an enthusiastic neurotic, I’m a hypochondriac with health problems, and I guess I’m anxious that I won’t be able to get insurance coverage in my old age, and I’ll end up being yelled at and bossed around in some grannies’ ward with rows and rows of beds, like in Memento Mori
.
Here Is a Human Being
includes some pretty sobering stories of insurance companies — and even the military — booting people because they’re at high risk for certain genetic conditions.
True, although I suspect that those types of stories are rare. But even if they’re not, I believe that one way of combating/preempting that sort of behavior is by having a cohort of people putting it all out there and seeing what happens. I am fairly well convinced that if an insurer or employer used a Personal Genome Project participant’s data to discriminate against him/her, the personal genomics hive would raise holy hell and quickly create a PR nightmare for the perpetrator.
Ah, so participation is actually a kind of insurance of its own! Where do I sign up?
Yeah, if you fuck with me, then you fuck with all of the public genomes and arguably the entire biomedical research enterprise.
More here, and we continue the conversation at McNally Jackson tonight, at 7 p.m. Join us if you’re free.