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A programming note: On Saturday afternoon I will be at the World Science Festival, which looks like more fun than people should be allowed to have. There I will infiltrate…pretend I belong on…annoy…er, appear on an otherwise esteemed panel, including Nobel laureate Paul Nurse, NHGRI Director Francis Collins (what the…?), computer scientist Latanya Sweeney, sociologist Nikolas Rose and geneticist Jim Evans. We will be talking about how personal genomics affects/will affect our lives; my genome and phenome (yawn) and, I expect, the PGP will be topics for discussion. Please stop by and say hello if you’re so inclined. (Thanks to the indefatigable Alison Snyder for making this panel happen.)

And even if genes and identity aren’t your thing, I encourage those in the NYC area to check out the rest of the Festival. Brian Greene, Tracy Day and company have done a masterful job in putting together an amazing program. It’s dork heaven. baby!

Comic lives here. Hat tip.

Well, I’m an oversharer — it’s not like I’m entirely reformed. But lately, online, I’ve found myself doing something unexpected: keeping the personal details of my current life to myself. This doesn’t make me feel stifled so much as it makes me feel protected, as if my thoughts might actually be worth honing rather than spewing.

- Emily Gould in the New York Times Magazine

Andrew Yates of Think Gene takes issue with my impassioned defense of GINA:

…you say that’s unfair and cite some fringe cases. I of course agree that your examples are unjust. Yet, I have yet to read a good argument why it is theoretically wrong if genetics is used as an objective standard to select people for services, employment, admission, etc. That good argument is not what you wrote.

How about this: It is theoretically wrong because we know that we are more than our genes and because we have a long paper trail of misguided and inappropriate social engineering supposedly based on genes.

How are we more than our genes? I received my Health Compass data from Navigenics the other day (I hope to post about this soon). Of the 17 conditions for which I received reports, heritabilities ranged from 0.13 (glaucoma) to 0.8 (Crohn’s). Most were in the 0.6 range. My lifetime risks, excluding all phenotypic data other than gender, ranged from 0.02% (lupus) to 41% (obesity). The latter is a bummer, of course, but it’s hardly deterministic (my current BMI is 26, FWIW).

The heritability of schizophrenia is on the order of 0.8–yet somehow we still haven’t found a single major susceptibility locus. Meanwhle, we have genotyped tens of thousands of people to find loci that contribute to height. Well, guess what: there are 54 and counting, each affecting height by an average of 2-3 mm (the standard deviation for height in the population is 7 cm).

To exclude a pilot because he carries a highly penetrant mendelian allele for narcolepsy is one thing, but it’s a rare thing. Genetic discrimination may be rare, too, but given the Burlington Northern precedent, given the military’s recent misapplication of genetics, given the entire ugly history of 20th-century eugenics, am I prepared to believe that government and corporate bureaucracies can be trusted to sort the wheat from the chaff and get “objective” genetic testing right without giving those getting tested some explicit legal protection?

Not yet.

…I say Onion.

Michael Kinsley is a smart man and a terrific writer. But I think he’s dead wrong about GINA when he writes:

Is it unfair that Yo-Yo Ma can play cello better than I can? Or that people hire Frank Gehry instead of me when they want a beautiful building, or that Warren Buffett is a better stock picker? Sure, it’s unfair. And it’s unfair in precisely the same way the results of a genetic test are: my lack of talent at playing the cello is something I was born with and beyond my control.

This is a non-sequitur. What’s unfair is when people are tested for diseases by their employers without their consent. What’s unfair is when soldiers are kicked to the curb by the military because their ailments are deemed pre-existing. And I think he’s wrong about insurance, too:

The very appealing notion that genetic discrimination is unfair looks especially odd in the context of insurance. The idea of insurance is to protect against the unexpected or unlikely. Forbidding insurers to take predictable risks into account when choosing whom to insure and how much to charge is asking them to behave irrationally and make bets they are sure to lose. Not insuring people who are likely to get cancer, or charging them more, isn’t evil. It’s rational behavior. Of course, we outlaw a lot of behavior that would be rational if it weren’t against the law. But the skeptics who say this is a step on the way to universal health care actually understate the case. To truly apply the appealing principle that people should not be discriminated against because of their genes would be a leveling experiment, like something out of Stalinist Russia or China’s Cultural Revolution.

Then I will sing “L’Internationale” at the top of my lungs. This is another specious argument. Most people in this country are not subect to medical underwriting–they are already treated blindly by their insurers*. Michael Kinsley has Parkinson’s disease. Should he be denied health insurance or employment? I don’t think so. Maybe it would be rational, but would it be right?

The question comes down to this: What kind of society do we want to live in?

*Yes, I know, this excludes the 45 million without health insurance at all.

My view–and Bob Cook-Deegan’s–can now be found here.

Six.

That’s how many times I was asked to repeat my name, social security number and date of birth to the technicians at the American Red Cross today. This is how we protect blood recipients?

An op-ed I wrote with Bob Cook-Deegan on the imminent passage (we hope!) of GINA into law appears in the Oakland Tribune:

…people fear genetic discrimination, which is what makes this new law so historic. In a recent survey, the Genetics and Public Policy Center found that 92 percent of respondents worried that genetic tests could be used in ways that are harmful to those getting tested. Only one in four said they would trust insurers with access to their genetic test results. Just one in six would trust employers.

The consequences of such fear, whether well-founded or not, could be grave. If people at risk for inherited diseases are unwilling to undergo genetic testing, they forego information of potentially immense importance to their lives. And if that same mistrust prevents citizens from participating in genetic and genomic research, the process by which our society develops new medicines and cures will suffer. Therefore, if GINA serves as nothing more than a reassuring symbol to a skittish public, it’s still well worth the price of the occasional lawsuit.

You know, I’m not a prude. I’ve been known to tell an off-color joke or two. I don’t presume to exude good taste nor do I get squeamish easily. But my God, every day I have to purge the most disgusting and perplexing spam, full of acts I’ve either never heard of or else are physiologically impossible.

I just wanted you to know what you’re missing. That is all.

Can you spot the real scientist? (photo by Bob Cook-Deegan)

I was walking through Tower City, the teeming mall in downtown Cleveland, regretting not calling friends I used to know when I lived there, when I spied, sitting alone at the food court with a New York Times, one of the giants of genome history, Maynard Freaking Olson, in town to give a brilliant plenary address. As is my wont, I shamelessly pulled up a chair and started interviewing him. I mentioned the PGP and his eyes lit up. We talked about personal genomics, why he thinks it’s all so much “Freudian genetics,” ELSI, race, changing fields, George Church, health care, liberal politics, the disappointments of GWAS, Jim Watson, and on and on.

I was wrong: George Church is unique in many ways, but he is not the only hardcore genome sequencer who actually takes a real interest in the societal implications of his work. Thank you, Maynard!