genomeboy.com

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.

For those interested in family history, the NIH is holding a conference in August:

The purpose of this state-of-the-science conference, open to anyone, is to develop a consensus statement that advances the issue of family history by assessing the available scientific evidence on:

• The key elements of a family history in a primary care setting for the purposes of risk assessment for common diseases
• The accuracy of family history, and under what conditions the accuracy varies
• The direct evidence that getting a family history will improve health outcomes for the patient and/or family
• Factors that encourage or discourage obtaining and using a family history
• Future research directions for assessing the value of family history for common diseases in the primary care setting

The details:

• Attend in person August 24-26, 2009 in Bethesda, MD  
• Or register to watch the live Webcast if you can’t travel to attend in person

Does family history really need a conference to generate consensus statements and “advance” the issue? I’m not sure. But I applaud the organizers for (presumably) holding family history to the same evidence-based criteria they so often demand of direct-to-consumer genetic testing.

(Thanks to Erica Holt for the tip)

Will Saletan:

We shouldn’t overstate the case. Genes don’t determine everything, and most genes don’t vary significantly between populations. But research is constantly finding new gene-trait correlations and group differences. If your faith in equality depends on an ethnically or racially even distribution of all ability-influencing genes, you’re in trouble.

That’s why the framing question matters. People of your race may be on average faster, smarter, or more volatile than people of my race. But the opposite pattern may turn up if you and I are classified in some other way. My dad was black, my mom was white, I was born in Hawaii, I was raised in a broken home, I grew up in Indonesia, I went to private school, I played basketball, I used drugs, my grades were unspectacular, and I went to Harvard Law. Guess my IQ.

The distribution question doesn’t settle the framing question, because race is just one way in which ability can be unevenly distributed. To answer the framing question in the affirmative, you have to show something more. You have to show that classifying and comparing by race, rather than using some other classification system or judging each person as an individual, does more good than harm.

Happy almost-DNA Day! I spent the morning at Lowes Grove Middle School discussing genomes, alpacas, agriculture, Monsanto and genetic ancestry testing. Thanks to all of the students and thanks to Ms. Lewis!

(Photo from Double D Alpaca Ranch)