genomeboy.com

In an effort to stop DNA testing on state campuses, a bill was introduced in the California legislature last week that would prevent the University of California system from:

“making an unsolicited request to an enrolled or prospective student of that segment for a DNA sample for the purpose of genetic testing.” It would also require that the universities report how much they are spending on such tests; the schools would then have their funding reduced by that amount.

Keep moving those goalposts, boys and girls. We may not be able to legislate morality, but ignorance is clearly within our grasp.

(hat tip: Dan Vorhaus)

If you’re like me and you go to way too many scientific and professional meetings, it’s easy to get jaded. I am trying to limit my travel to stuff that 1) I can afford; and 2) actually interests me. One meeting I am totally geeked up for is the Open Science Summit in Berkeley, California from July 29-31, and organized by Joseph Jackson and his merry band of paradigm-shifting partners in crime:

The well known “10/90” gap references the fact that only 10% of biomedical spending goes toward conditions that affect 90% of the world’s population.  Under this regime, “diseases of the poor,” such as malaria, are neglected, while companies focus on “blockbuster” drugs for conditions that affect citizens of the wealthiest nations.  This situation, appalling though it is, actually grossly understates the systemic flaws of the prevailing biomedical innovation paradigm.  Framing this as a tradeoff between Market vs Social Values or the need for balancing commercial interests with public health, implies that the bio-pharma industrial complex works for what it purports to do.  If only we could find some way to engage or tweak existing mechanisms, we’ll make it through.  Wrong! 

There will be sessions on synthetic biology, gene patents, open data/open access, biodefense, microfinance, entrepreneurship, drug discovery, tech transfer, and more. There will be smart, talented and good-looking presenters (and, uh, me). And it’s cheap!

Why am I pimping this so hard? I am supportive of the cause. These are ideas and approaches that are less likely to be embraced by funding agencies and academia (as you will learn in my forthcoming book). I like and respect the organizers and want to see them succeed.

See you in Berzerkeley!

Walgreens puts the kibosh on Pathway Genomics, at least for the moment. Genomics Law Report has details and analysis.

If I were Pathway, I would take this opportunity to look in the mirror. Whether it was a factor in the FDA’s sudden interest in the company or not, there seems to be a paucity of information on Pathway’s website. There is a list of conditions that Pathway tests for, but there are no details and the list is “current” as of October 20, 2009. In clinical genomics, that’s a long time ago.

More troubling, I think, is the lack of specifics about exactly what’s included in Pathway’s tests. 23andMe, for example, has been completely upfront about what alleles are being screened for in its services. Without giving up my credit card or logging in, I can learn that for cystic fibrosis, the company screens for 31 mutations and that for Caucasians, these variants cover 85-97% of all known mutations; for African Americans, Hispanics and Asians it’s more like 50-75%. Thus, before I’ve spent a red cent, I can know that 1) this test will not get me completely off the hook and 2) my ancestry can have significant bearing on my risk.

My point is, if you want to be taken seriously, not only by the FDA but by docs and, oh yeah, by your customers, then don’t insult us. Give us the technical data, explain what fraction of our risk can be attributed to genes insofar as is known, link out to the primary references, and when the science changes, don’t wait six months to change your website. Indeed, you might want to do it before you launch your national retail marketing campaign.

As I’ve tried to make clear below, I’ve got no problem with genetics in the drugstore. But it’d be nice to know exactly what’s inside the box.

On April 24th and 25th in Cambridge, MA, the Boston Open Source Science Lab will be amplifying and sequencing genes for anyone with 40 bucks.

Together, we’ll use the polymerase chain reaction (PCR) to amplify a fragment of one of your genes and have the DNA sequenced. The event will be part of the Cambridge Science Festival and will run from 12 - 4 pm on April 24th and 25th.

We’re doing it at the bosslab, located at 339R Summer St, Somerville, MA 02144, at Sprout. The cost of materials is $40 / person.

I will provide primers that will enable us to amplify sections of several popular genes. If you have a particular gene of interest, please get in touch…

That sound you hear is hundreds of clinical geneticists’ panties getting in a wad. And maybe a few IP lawyers, too…

See you there, you DIY rascals you!

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

Stephen Asma:

Feeling unworthy is still a large part of Western religious culture, but many people, especially in multicultural urban centers, are less religious. There are still those who believe that God is watching them and judging them, so their feelings of guilt and moral indignation are couched in the traditional theological furniture. But increasing numbers in the middle and upper classes identify themselves as being secular or perhaps “spiritual” rather than religious.

Now the secular world still has to make sense out of its own invisible, psychological drama—in particular, its feelings of guilt and indignation. Environmentalism, as a substitute for religion, has come to the rescue. Nietzsche’s argument about an ideal God and guilt can be replicated in a new form: We need a belief in a pristine environment because we need to be cruel to ourselves as inferior beings, and we need that because we have these aggressive instincts that cannot be let out.

Let’s let Dr. Frank Baxter inaugurate the start of a new school year:

The report said 85 percent of science association members surveyed said public ignorance of science was a major problem. And by large margins they deride as only “fair” or “poor” the coverage of science by newspapers and television.

Only 3 percent of the scientists said they “often” spoke to reporters.

In a telephone news conference announcing the survey, Alan I. Leshner, chief executive of the science association, said scientists must find new ways to engage with the public.

“One cannot just exhort ‘we all agree you should agree with us,’ ” Mr. Leshner said. “It’s a much more interactive process that’s involved. It’s time consuming and can be tedious. But it’s very important.”

Hmmm. The head of the most important science organization in the country, if not the world, starts from the premise that educating and interacting with the public about science is time consuming and “can be tedious.” I can’t imagine why so much of the citizenry knows and cares so little about what we do. Can you?

As usual, I am pathetically late on this (just throw me the odd crumb, once in a while, dude). A couple of months ago the attorneys at Charlotte-based Robinson, Bradshaw & Hinson, P.A. launched the Genomics Law Report:

The Genomics Law Report focuses on the legal implications of important developments in the fields of genomics and personalized medicine — including key litigation, legislative, regulatory and policymaking activities — in order to facilitate understanding of the complicated and shifting legal landscape governing genomic and personalized medicine commerce and research.

RBH has provided legal services to the Personal Genome Project and one of its attorneys, Dan Vorhaus, helped articulate the PGP’s initial vision for open consent.

Genetic Future has everything you need to know about 23andMe’s foray into genetic research on ten common diseases. Here are what I consider to be the nut grafs:

It’s easy to be cynical about 23andMe’s motives in launching this initiative - this is, after all, a profit-making exercise rather than a research charity - but I suspect that many academics will be watching 23andMe’s progress in this venture with considerable interest. Modern genomics studies require mind-bogglingly large numbers of samples to achieve the power required to find subtle genetic associations, and recruiting those numbers of patients is far from easy. If 23andMe’s model proves successful in recruiting and maintaining large communities of patients, I suspect large academic consortia will at least begin to consider the possibility of pursuing similar approaches.

That actually puts 23andMe in a potentially lucrative position. In order for academic consortia to pursue the 23andMe model, they need to be in a position to return comprehensive results from genome scans to their patients and controls. However, providing such complex information to a lay audience is extremely difficult, and probably beyond the means of most academic groups. That means (as I noted back in March) there’s a potentially massive possible market for 23andMe here in providing a mediation service for returning research data to patients, and for providing the resources required to keep participants engaged actively in the research community.

Ever since 23andMe began shouting from the rooftops that it wanted to do research, there has been more than a little suspicion about what the company was “really” up to. I think Daniel is absolutely right: in the simplest terms, the company believes that there is an unmet need in genetic research (subject ascertainment, data collection, return of results to subjects) that it can begin to help satisfy and in doing so it will generate revenue. Some might argue that there are already perfectly fine mechanisms for informed consent and human subjects research in genetics. GWAS are great! The status quo rocks!

Others, ahem, have a different view.