Understanding genetics has been my secret sisyphean endeavor for the past five or more years. It’s a subject that I know is deeply important, and I sincerely want to understand how all those strands of DNA work, but any time I pull one of Matt’s genetic textbooks off the shelf, my eyes roll back in my head and I have to grind through the paragraphs. It’s only sheer perseverance that pushes me to the end of a page. Yet the desire to know more about DNA still persists. Like I said, it’s my sisyphus.
So it was with interest that I picked up a copy of Misha Angrist’s new book, Here is a Human Being: At the Dawn of Personal Genomics. (HarperCollins Publishers 2010.) Angrist is an assistant professor at Duke University’s Institute for Genome Sciences and Policy. I first “met” him when I did a Q&A with him about his blog, GenomeBoy, with the Charlotte Observer’s Science Pages. But I have to admit, I figured I’d need to go into eyes-rolled back, perseverance fueled-mode to finish his book.
I was wrong. So deliciously wrong.
Angrist’s book is immensely readable, even for a neophite like me with little (translate: no) background in genetics. Angrist is one of the original ten people to participate in the Personal Genome Project run by George Church. The PGP is a research endeavor to decode each of the participants entire genomes and then make their information publicly available. In this story, Angrist traces the journey of the PGP as a research project, as well as the technical journey of competing biotechs that are each seeking to bring lower and lower cost technology to market to decode the human genome (and market the results to consumers). But the most engaging aspect to me is a parallel story line about his own journey into understanding the meaning that we human’s assign to our genomes, and the meaning that we assign to understanding the content they hold.
As a participant in the Personal Genome Project, he is in the unique position of being able to look at his own genome, a prospect that he seems to find at once intriguing and life-alteringly scary. (Do you really want to know if you are likely to develop Alzheimer’s later in life?) Wading into your own genome is an experience that is as abstract as it is concrete. Contradictory, I know, but one of the things Angrist conveys in this book is that even though the technology is developing, and becoming more cost effective, to detect and record all six billion base pairs of your genes (that would be the concrete part), scientists are still struggling to make sense of what these terabytes of information mean (that would be the abstract part).
Angrist also delves in to the human dimension of what it means when an individual chooses to dive into their own genome — he likens it to drinking from a fire hose — an experience that is as individualistic as it is communal in terms of how the information you learn about yourself can affect your loved ones, and even your children. In short, once the cells are “cracked open,” as he calls it, it’s hard to limit how the information will be used, or who can learn about it.
Readers learn about Angrist’s struggle whether to learn if he carries any of the genes or their variants that are associated with breast cancer, because learning this would affect his two young daughters. Should he redact this part of his genome before releasing it to the public? If he is a carrier, when should he and his wife tell their kids? Because he was a PGP participant and his genome would be publicly available, would someone be able to piece together the base pairs edging the redacted part of his genome, and would his daughters find out half of their breast cancer inheritance probability from an intrepid blogger?
For a book on genetics, Angrist also reveals a lot about his own human foibles. This passage in particular hit home with me:
I was depressed, emotional, on edge. I was living inside my head, as is my wont, and at that time it felt like an especially ugly place to be. I was feeling paranoid, constantly trying to parse what people said to me, taking every perceived negative, no matter how slight, to heart, and convinced that anything positive that came my way couldn’t possibly be sincere. There’s an old Loudon Wainwright song that goes, ” I don’t know why you love me / I hardly love myself at all.” This was my theme song. (pg. 147)
Wow. This could be a page from my own life this fall. Despite getting engaged to my beloved this summer, ever since our car accident, I’ve been battling bouts of despair and an unshakable sense of doom that life as I know it will be suddenly and irrevocably changed for the worst. Again. In short, I identified strongly with Angrist’s own angst.
But despite the despair of this passage, the rest of the book is peppered with a good does of laugh-out-loud humor that is at once cavalier and refreshing. For example, when he takes a spit-kit DNA test offered by Navigenics and reviews the results for what disease he is at risk for, he reports his obesity risk is 36 percent (2 percent above the population risk). “Does this genome make me look fat?” He asks.
One of the thornier issues Angrist’s book investigates is that of what do with the information encoded in our cells — does the average person have a right to know what’s in their DNA? I can hear supporters of open-access journals shouting Yes, they do!, but there are important issues to be considered, especially in protecting consumers from predatory businesses that may just want to make a buck off people’s desire to know information about themselves — regardless of whether these companies are able to put this information in the proper context for the consumer, or even if the consumer can understand their meaning. The book follows the legal debates around 23andMe, Navigenics and other groups that offer genetic testing to individuals. In this vein, perhaps my favorite chapter was number-9, “You can do this in your kitchen,” about dedicated do-it-yourselfers who decided they were going to peer inside their own cells — regulations be damned. The best characters in the whole book are in this chapter. (That’s all I’m going to tell you, you’ll have to read it to find out why.)
This book is as much a story about people as it is about their DNA and their relationship to their DNA, and this is the strongest aspect of Angrist’s writing , in my opinion. He craftily conveys the different characters’ personalities in a way that engages you to the last page. But it is Angrist’s own humanness — his intense curiosity, knowledge and yes, even the bouts of self-deprecation — that permeate the story and transport it from the realm of cold, hard science with little relevance to our lives into the realm of a extreme relevance. Here indeed is a human being, studying how the billions of A, T, C, and G base pairs that we carry around with us make us who we are, and what the heck it all means.