genomeboy.com

What’s the story behind your blog’s name?

When I told a friend I was getting my genome sequenced, she said, “Why you? What makes you so special, Genome Boy?” I thought that was funny.

What do you think the greatest challenges will be for individuals in the future, as the technology makes accessing personal genomes more affordable?

There will be many. One will be logistical: How do we manage all of this data about ourselves? Another will be learning to think probabilistically: What does it mean to have a 35 percent lifetime risk of Type 2 diabetes? This gets at a larger question: How do we retrain ourselves not to view genes as destiny? They’re clearly not - we are incredibly complex creatures affected by thousands of genes and an infinite number of environmental stimuli. But that’s a hard sell, and as a consequence, genes have been marketed as destiny. We have to get beyond that.

The GET Conference 2010 marks the last chance in history to collect everyone with a personal genome sequence on the same stage to share their experiences and discuss the important ways in which personal genomes will affect all of our lives in the coming years.

Tickets are pricey. This is a (long overdue, IMHO) fundraiser for PersonalGenomes.org:

We foresee a day when many individuals will want to get their own genome sequenced so that they may use this information to understand such things as their individual risk profiles for disease, their physical and biological characteristics, and their personal ancestries. To get to this point will require a critical mass of interested users, tools for obtaining and interpreting genome information, and supportive policy, research, and service communities.

Watch for a quick shot of the Personal Genome Project’s Joe Thakuria at 0:04.

Jason Bobe, DIYBio co-founder and Personal Genome Project Director of Community, on NPR:

RAZ: And so, are most of the people who are sort of these citizen scientists, I mean, are they actual scientists, or are they amateurs?

Mr. BOBE: It’s actually a wide range of different types of people. There are quite a few graduate students and professional scientists who moonlight as a citizen scientist. And we’re actually starting to see groups in various cities setting up laboratory space that’s a shared laboratory. They sort of pull their resources like clay potters have done with kilns or woodworkers have done with expensive lathes.

Listen to all of it here.

As “the first genomic generation” we will set the rules that many future generations may follow. Will we treat our genomes like our faces, which we share publicly even though they reveal details about our health, ancestry, and personality? Or will we be forced to hide them from view? Knowing our DNA could make us think of ourselves more mechanically, and yet increase our humanity by embracing our diversity. It could render us less mysterious, yet more awe-inspiring. Our genomes are a vast future resource. How we handle them will define us as a species—not as a fuzzy average, but with our individualism evident in detail.

- George Church in Newsweek

From a compelling story in the New York Times Magazine:

In an age of DNA, when biological relationships can be identified with certainty, it can seem absurd to hew so closely to a centuries-old idea of paternity. And yet basing paternity decisions solely on genetics places the nonbiological father’s welfare above the child’s. Phil Reilly, a lawyer who is also a clinical geneticist, has been wrestling with the policy implications of DNA testing for years, and even he is stumped about how society should manage the problem that men like Mike face. “We’re at a point in our society where the DNA molecule is ascendant, and it’s very much in the public’s consciousness that this is a powerful way to identify relationships,” Reilly says. “Yet at the same time, more people than ever are adopting children, showing that parents can very much love a child who is not their own. The difference here for many men is the combination of hurt and rage over the deceit, the fact that they’re twice beaten. I can see both sides of this argument. As a nation, we’re still in search of what the most ethical policy should be. Every solution is imperfect.”

The Personal Genome Project includes disclosure of nonpaternity as one of the explicit risks of participation. That said, having been warned is probably not much consolation to people who discover certain surprising things about their families.

Stephen Quake discusses what he learned from his genome:

FWIW, Quake, co-founder of Helicos, interpreted his sequence using Trait-o-matic, an open-source app developed in the Church lab that I and the rest of the PGP-10 are using to interrogate our genomes and about which I expect to have more to say in the near future.

As Jason notes, filmmaker Marilyn Ness has taken on the unenviable task of making a documentary about the Personal Genome Project. I reckon the only thing crazier would be writing a book about it.  Anyway, I happen to think this webisode in particular captures George Church’s ch’i and his whole family’s remarkable ability to live in the moment. And I think this clip hints at—and I say this with nothing but affection—what unrepentant dorks the ten of us are.

I was fortunate enough to attend the Big Think forum a couple of weeks ago that included a stimulating session on personal genomics. The panel featured population geneticist and grad school pal Tara Matise as well as PGP-10er Esther Dyson, whose 58th birthday was that very day. Check out this cake.

Deoxyribolicious!