George Church - My Life As A Guinea Pig

 

I was born a mammal. [audience laughter] Part human, part guinea pig. I grew up in love with my single mom and her mother, an Ashkenazi immigrant who had converted our home into a boarding house full of fascinating and strange people. While she was busy taking care of their needs, fixing their meals and their plumbing, handing out personal advice and sharing medicines, I was running wild through the house, invading everybody's privacy. I would check out their crutches, and their false teeth. Really, they were living in our home and they weren't really concerned about privacy. They were more excited about telling their stories, and it was wonderful. 

 

My mom at this time considered herself a poor, divorce lawyer, because most of her cases ended up with reconciliation. [audience laughter] So, she slowly transitioned into being a psychologist. [audience laughter] During that time, I became her favorite guinea pig. She would come home excited with new ideas, like, whether I could rotate geometric shapes in my head. She would test out theories like preventing my five-year-old brother from becoming a pyromaniac by giving him lots of matches to light until he got tired. That did not work out well. [audience laughter] 

 

So, a few years later, I'm starting college at Duke. I'm taking psychology classes in my mom's footsteps, and they require all of us to become guinea pigs in their government funded psych research. And of course, they're playing mind games with us, because they are psychologists, after all, and they're saying they're doing one thing and they're actually doing something else. I'm trying to figure out what this is, but the main thing I'm figuring out is how if you're not forthright with the people that you're doing experiments on, there's a lack of trust there. [audience laughter] 

 

So, a few years later, I'm a student now at MIT, and again a guinea pig in my spare time, this time on nutrition study, where the scientists are trying to starve us of leucine, which is required for life. [audience laughter] I think it's really great. 300 bucks and all the food you can eat. But the food is this fake jello, as if jello wasn't fake enough, made out of cornstarch and bright red and like fake cookies made out of corn starch and a little vial of amino acids which really taste terrible. 

 

They want to make sure that we don't gain or lose weight. So, I'm eating tons of this terrible tasting stuff, because I'm fairly active. By the end of the study, everybody has dropped out of this. They also, by the way, make us collect all of our metabolic-- put it politely, our metabolic outputs. [audience laughter] I'm living in fear that my metabolic outputs will escape during one of my classes where [audience laughter] I'm trying to be a normal quantum physics student. And they didn't. I did make it through the whole 45 days. Like I said, everybody else dropped out. I learned a little bit more about getting people to stay in research studies. [audience laughter] 

 

Soon thereafter, I'm a professor now in my own lab, my new shiny lab, and I'm getting government funding to develop new DNA sequencing methods, reading your genomes. It's suddenly going very, very fast, astonishingly fast and we're going from very simple experiments to being able to do lots of human genomes. I realized really, before we can do human genomes, we have to get permission and we need to learn all about proper protocol and consenting people once again. 

 

So, I take the course and the test that helps you get approved for this process. We learn all about the abuses in the past, like the Tuskegee Syphilis experiment or the abuses in the name of eugenics both before and after World War II. This makes historical sense. But what doesn't make sense is the advice they have for what we're supposed to do today. We're supposed to not tell the people in the study anything about themselves, any data we collect. Even if we find out something that could save their lives, we're not supposed to know who they are and we're not supposed to have collected data that's good enough to make a recommendation even for a simple follow up diagnostic. 

 

Craziest of all is we're supposed to promise them that we're going to keep their data completely private when many much more well-funded government agencies are having their data leak out in a whole variety of ways from hackers, including medical records and WikiLeaks and so on. So, I'm uncomfortable with this and decide that we really have to challenge it, ee have to do the opposite, we have to make waves, in a sense. And so, we proposed to give the data back to the people that are participating in the study. They might find some use for it, and they might tell us where we're wrong and to enable them to share the data and get educated about interpreting it. 

 

And so, we get permission from the ethics review board at Harvard Medical School. One of their conditions is that I become a guinea pig, again, in my own study. I'm not quite sure what this means, but I figure, I've been guinea pig all my life, why not get this project going? So, we have permission to take samples from all over the body, saliva, blood, skin, gut components. 

 

One day, so, I make a deal with one of the dermatologists at local hospital to get some skin. I'm guinea pig number one. But I soon learned that he is the reincarnation of the Marquis de Sade, [audience laughter] because he has a pet theory that the anesthetics that we usually use to reduce pain are actually toxic to the cells we're trying to collect from the hip. This is his story. And so, he does 12 anesthetic injections around the sites, pretty far away from the site, [audience laughter] and then jams in this gigantic metal punch about six millimeters, twists it. Sorry, I should have warned you this was graphic. [audience laughter] And then, lifts the skin and cuts it with scissors and it takes 11 stitches to hold it together. 

 

The labels that my mother used to assign start ringing in my ears as stoic with pathological calm in the face of danger. [audience laughter] But I say, “No, none of the other participants in the study are going to do skin biopsy that particular way.” And so, weeks go by, and we're not really collecting skin, because I don't know what to do. We do, however, get a new physician that joins our project named Joe Thakuria. Wonderful guy. He also does studies right across the way at the Children's Hospital. He commonly mentions someday that he’d collected a few skin biopsies from the kids. 

 

I'm thinking, gee, you know, all that screaming and thrashing. [audience laughter] I say, “Joe, how do you do that?” “There's no problem. We just put a little anesthetic cream on, wait a little while, take this itty-bitty punch, punch it in there and put a bandage on. So, no injections and no stitches.” I say, “Huh, [audience laughter] let's do that.” And that's how we've been doing it ever since. It slowly dawns on me why it is the Harvard Ethics Board has asked me to be guinea pig number one in my study is to make sure that everybody else has a pleasant experience [audience laughter] and doesn't quit the way most of them did in the nutrition study. 

 

So, fast forward to today and this edgy, strange, small, to be ignored project, 10 years later is now setting the standards literally almost every project now. It's very hard to not return data to patients. Patients are more and more often asking for it, and it's even being written into laws. Literally, two of the major standard setting government agencies, the NIST and the FDA, which set standards for kilometers and therapeutics and so forth, have adopted in a project called the Genome in a Bottle, have adopted our people, our genomes as the world standard for genomes, because none of the other projects were properly consented. 

 

And so, I've been a guinea pig all these years. I'm still guinea pig today. I think back to when I was trying to please my mom as a young guinea pig-- [audience laughter] I think, well, maybe I'm a lot more sophisticated today about my relationship to science. Or, maybe not. I still think about respecting this lineage going all the way back from my grandmother to my 18-month lovely granddaughter and how we're all sharing our stories like we did in this boarding house, all within the house. We're trying to exchange information about our health to make the house and everybody in it a little bit healthier. Thank you.