genomeboy.com

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!

At last week’s Translating ELSI meeting, I was amazed at how large the topic of race and genetics loomed. Perhaps I shouldn’t have been: Race is our deep and abiding national wound — it never seems to heal.

In Slate, Will Saletan rethinks his earlier defense of James Watson’s unfortunate remarks:

…policy prescriptions based on race are social malpractice. Not because you can’t find patterns on tests, but because any biological theory that starts with observed racial patterns has to end with genetic differences that cross racial lines. Race is the stone age of genetics. If you’re a researcher looking for effects of heredity on medical or educational outcomes, race is the closest thing you presently have to genetic information about most people. And as a proxy measure, it sucks.

Might personal genomics and widespread sequencing help to change this?

NEW YORK (GenomeWeb News) – A little less than a week after its passage by the US Senate, the Genetic Information Nondiscrimination Act has been passed by the US House of Representatives by a vote of 414 to 1.The bill is the closest it has ever come to being signed into law after being considered in various iterations by both chambers of Congress over the past decade. GINA, which would protect Americans from discrimination based on information from genetic tests, had previously passed in the House twice before — most recently last year, when the vote was 420 to 3 in favor of its passage.

And by the way, we’ll miss you Ron Paul, you ornery cuss.

In April 1986 Nancy Wexler appeared on 60 Minutes to talk about Huntington’s. “I’ve always believed in knowledge for its own sake,” she said. “And it is ironic that after working for precisely that, I’m finding it much more complex than I ever thought it would be.”

***

Speaking once again on CBS in 2004, [Wexler] said, “I think there’s a huge amount of social pressure on people to get tested. I know that with me, if I were to go to bed every night thinking I’m going to die of Huntington’s, you know, why should I bother getting up?”

- From Blood Matters by Masha Gessen

They said it couldn’t be done.

(hat tip)

Two items of note:

• First, Dr. No has apparently said yes and so GINA appears to be getting her long-awaited day in the sun. Amazingly, we haven’t all expired from old age.

• Second, the ridiculous case against bioartist Steve Kurtz has been dismissed. Sometimes the justice system actually works…on the other hand, I’m not sure it worked terribly well for geneticist (and former teacher of mine) Bob Ferrell:

Originally charged with mail and wire fraud, Dr. Ferrell entered a plea in October to a lesser misdemeanor charge of “mailing an injurious article” which carried a recommended guideline range of up to six months in prison and a $5,000 fine. In a statement, his family said he pleaded guilty for health reasons. Since the prosecution began, he suffered three strokes and dealt twice with cancer, which is now in remission.

In February, Judge Arcara sentenced Dr. Ferrell to serve 12 months unsupervised probation and to pay a $500 fine. In exchange for his plea, Dr. Ferrell was required to cooperate with the case against his friend.

NEW YORK (GenomeWeb News) – The New York State Department of Health has sent warning letters to 23 firms involved in offering consumer genomics services and genetic tests to consumers, telling them that they need a permit to offer such tests and services, a department spokesperson told GenomeWeb Daily News today.

Jeez, you’d think these companies were trying to hold a parade or something.