genomeboy.com

Jason links to Esther Dyson on the Charlie Rose show. He also links to other genetics-on-TV clips and muses on the frustrations and possibilities of video on the web.

Esther is one of my nine fellow subjects in the initial round of the Personal Genome Project. Watching her on Charlie Rose, I wonder if George Church didn’t accept me as a PGP volunteer in order to lower the mean IQ of the project…

I regret having to start this blog on such a downer note, but very recently two people I knew died. Both played what I would call small but memorable roles in my life: Marcy Speer and Liam Rector. Both left us much, much too soon. I post this not to elicit your sympathy or to imply that I was somehow close to either of them, but rather just to honor their too-brief lives in some small way.

When I was a callow student getting a master’s degree in genetic counseling in 1989, I came to Duke to do a research fellowship in the Department of Neurology. The name of the game back then was genetic linkage: find a genetic marker in the same chromosomal neighborhood as your disease-causing gene of interest and then work your way toward the gene itself. This was not something for amateurs like me; I knew bupkes about statistics and quantitative genetics (I still don’t, but never mind). Marcy, herself a grad student in statistical genetics, took the time to orient me, answer my litany of dumb questions abut linkage analysis with saintly patience, and generally make me feel welcome. Fifteen years later I found myself sitting in her office at Duke (a place she never left), interviewing her about her work on susceptibility genes and environmental causes for neural tube defects. By then she had amassed a pile of publications and earned a reputation as a whip-smart, tireless human geneticist with collaborators from all over. In a field fraught with dirty politics and backbiting, I never met anyone who had a bad word to say about her–not even close! What I remember about that day in 2004 was asking her a question about complex inheritance of NTDs and listening as she paused, shook her head and said, “I don’t know. What do you think is going on?” Never mind that I had no clue. Her response was simply an honest expression of her own curiosity, grace and humility, a willingness to entertain an idea from anywhere and anyone without ever letting her ego infringe–in other words, typical Marcy.

She died earlier this month after a long struggle with breast cancer. She was 47.

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Liam Rector was a poet and director/founder of the Bennington Writing Seminars. I’m no poet, but my sense was that Liam never failed to the walk: he was a TS Eliot worshiper and always gave the incoming class a pep talk about Keats’s theory of Negative Capability (an idea that I subscribe to more and more as I get older and find to be especially relevant to personal genomics). During my first semester, after I had bullied one of the teachers into letting me introduce Loudon Wainwright III before his performance at Bennington, Liam gave me a mini-seminar on the poet Philip Larkin and how Larkin was the Loudon Wainwright of his day. And in my last residency, just after I gave a talk on an obscure Russian short story writer, Liam and I sat together and revisited the idea of the misanthropic artist. Years later we would share some controlled substances at a Bennington party in Somerville, MA, where, as usual, he greeted his alums with warmth and affection, despite his own ill health. I can’t say I knew him well, but from my vantage point, with him in charge, Bennington would always be well looked after–no matter how sick he became, he was always engaged with and fiercely protective of the program and us, his students. Some of my Bennington peers might cringe at the low-brow analogy, but I would say that he was, quite simply, our Dumbledore–he always had our backs. The long shadow he cast over the Writing Seminars will not recede any time soon.

Liam took his own life on August 15, 2007. He was 58.

Welcome to genomeboy.com. Here are some throat-clearing preliminaries and disclaimers:

• My name is Misha Angrist. I am a recovering geneticist with a PhD from a once-proud institution that changes presidents with alarming regularity. I am also a writer. A meditation on genomics and intellectual property can be found here, a twee short story here and, for you masochists and archeologists of textual obscurity, a link to my doctoral dissertation here. Some time after my stint in the genetic research mines I went to writing school for two glorious low-residential years here*. Occasionally I try to write funny essays for my friend Nicole’s amazing zine, Hausfrau. Since 2003 I’ve worked as a science editor here. It’s a great job and I hope none of my bloviations at genomeboy.com will do anything to jeopardize it. As the man said, “One never know, do one?” (hat tip: Birnbaum)
• Let’s talk about the name of this site. (Just once, though–I promise.) When I told a friend that I was going to be one of the first ten subjects in George Church’s Personal Genome Project (PGP), she said, “Why you? What makes you so special, Genome Boy?” I thought that was funny. And so here it is. In the spirit of good sportsmanship, I will answer to”Genome Boy,” but don’t expect me to don the tights and mask. And know this: no capes.
• The answer to my friend’s question, of course, is nothing: Nothing makes me special. I simply volunteered for the PGP. I had the requisite “master’s degree in genetics or equivalent” and thought it sounded cool (so far, it is…I will keep you updated). Some of my bioethically inclined friends seem to want to have it both ways, however: they think we early adopters are to be excoriated for availing ourselves of the equivalent of a free trip to the moon. We dare to make a mockery of the scientific enterprise with all of this icky Celebrity Genomics**. At the same time, they say, by posting our DNA on the internet we are recklessly endangering ourselves and our families–we are assuming enormous risk by exposing our genomic dirty laundry to the world. I will have much to say on this subject and various other aspects of genomic privacy and confidentiality writ large and small. For now, to the alarmists I can offer only this measured, thoughtful and articulate response: pffffffft.
• I can’t promise to always be so temperate in my remarks. I hope when I use profanity it will not be gratuitous. Sometimes the language here may get salty and maybe gratuitously so; I don’t expect anyone will be permanently injured as a result. So, caveat, Blog Reader: if your sensibilities are delicate, best to click away now.
• I promise there will be plenty of personal genomics here. But, as I am fairly convinced I have some form of ADD, there will probably be lots of other stuff, too–comments about and links to books, litbloggy stuff, music and the occasional puerile YouTube, for example. For purists who want an unadulterated dose of personal genomics and don’t already subscribe to it or read it regularly, among the many wonderful sites listed on the right is The Personal Genome, whose proprietor Jason Bobe coordinates the PGP and is one of the smartest people I’ve ever met. TPG readers know that Jason is a true big-picture thinker (I, on the other hand, tend to be consumed with my own stupid little problems). Anyway, check out TPG–it’s a must-read if you care about this stuff.
• I welcome your comments, though I will moderate the bejeezus out of them. If you are trying to sell erectile dysfunction products or other spamalicious merchandise, you will be expunged. Similarly, if through your comments you reveal yourself to be a hostile assclown, you will be shown the door (benign assclownery, on the other hand, is at worst tolerated and usually condoned). So please try to play nice, follow the golden rule…yada yada. I will always try to walk the line between civility and snark and hope you will do the same.
• That’s enough of the pre-game show, methinks. I don’t want to make bold predictions about what the site will or won’t be. Because really…one never know, do one?

*Go ahead and trash MFAs all you want, kids, but I wouldn’t trade my time at Bennington for all the street cred in the world.

**And by the way, if you think I’m a celebrity, then you absolutely need to get out of the house more often (or turn on the TV). But you know, keep saying it because then maybe it’ll come true and I’ll be able to tell my parents that all of those years in grad school weren’t a total waste because they brought me Fame and Wealth.