Science & Technology

Geno-Luddites and Berkeley’s On the Same Page program

Michael Eisen

Last week Berkeley announced a plan, spearheaded by my colleague Jasper Rine, to offer a set of simple genetic tests to incoming freshman as part of this year’s On the Same Page focus on personalized medicine. The idea is to personally engage students in the topic – to get them talking and thinking about human genetics and the ways in which the myriad scientific, medical, social and ethical issues that accompany it may affect their lives.

The program was carefully designed and approved by the independent Institutional Review Board that oversees human subjects research at Berkeley. DNA from each student who chooses to participate (it is voluntary) will be tested for three genetic variants that, respectively, affect their ability to metabolize alcohol, milk and vitamin B9. A barcoding system will ensure that only the student will be able to figure out which results belong to them. The samples will be destroyed as soon as the testing is complete.

I think it’s a great idea. There’s nothing like giving students a personal stake to get them interested in a topic, especially one that has long seemed too complicated and abstract to most people. So it’s extremely dismaying to see the kneejerk response to the plan from the new league of genetic luddites, who seem to emerge any time they hear the word “genetic test” to screech about terrible risks of learning about one’s own DNA and demand that testing be suspended.

There are certainly lots of complicated issues surrounding the coming age of personal genetics (see, for example, the DNA Age series published by the NY Times). But we are not going to deal with them by burying our heads in the sand and pretending that genetic testing is not going to happen. I simply cannot understand how these people – whose greatest fear seems to be exposing a genetically illiterate population to genetic information – could oppose a program whose main goal is to educate the next generation about genetics.

The first salvo came from the Berkeley based Center for Genetics and Society, a self- appointed genetic watchdog group (whose staff includes no geneticists). Here is some of what they had to say about the plan:

“Catalyzing discussion and debate about the future of genetic technology is a wonderful idea,” said CGS Associate Executive Director Marcy Darnovsky, PhD. “But this is the wrong way to do it. This project could fuel common misperceptions about the importance of genetic information, and sets a bad precedent about the way genetic tests should be used. In effect, it puts the university’s seal of approval on products that have not been – and may never be – approved by federal regulators.”

The point of this program is not to push genetic tests on students – the point is to educate them about what these tests do and don’t mean. Do they seriously think that the net result of this program is going to be Berkeley genetics faculty telling students that genetics is destiny and they they should run out and act on every snippet of genetic information they receive? Cmon. This is a UNIVERSITY. Apparently these guys need to be reminded that a university is a place where we teach students how to think about things. And we’re actually quite good at it. I can think of no better place, time or manner to have this discussion. They can’t seriously expect us to only engage topics that have been approved by federal regulators?

The Center for Genetics and Society thinks that the only appropriate place to have a genetic test is in a doctor’s office, where you can discuss the results with a doctor or genetic counselor. Yet somehow they think that it’s inappropriate to have this conversation with one of the world’s leading geneticists? Someone who taught genetics to many of the same doctors and genetic counselors the CSG holds in such high esteem. It’s ridiculous.

Another “genetic watchdog” weighed in with a similar complaint:

“To be so cavalier about using genetic testing in this way without appropriate safeguards is really astonishing and a very large disservice to the students they’re supposed to be educating,” said Jeremy Gruber, president of the Council for Responsible Genetics, which sent a letter to university officials Thursday criticizing the project.

I wish they would explain how this is a disservice. Do they know (or even care) how Berkeley is going to use this information? What safeguards are they talking about?  They haven’t bothered to find out or think about the way in which this information is going to be used in the classroom and in the broader education process. They just assume that geneticists (again, we’re talking about a genetics organization with no geneticists on staff) are evil and are out to shove this information down people’s throats. It’s deeply offensive to the people who designed this program and thought long and hard about how to design this program, and really to all of us who have dedicated our lives to educating people about genetics.

The whole thing is absurdly paternalistic. At the core these people think the public – including our best and brightest students – are incapable of understanding something as complex as human genetics, and that they need to be protected from this information. I’m glad the Berkeley has not backed down and is going ahead with the project. And I hope the Geno-Luddites can put aside their reactionary instincts and recognize that this program is a good thing.

Full disclosure: I am on the scientific advisory board of 23andme, a company that offers the public the opportunity to have their genome analyzed and provides online tools to help them interpret the results.

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Comments to "Geno-Luddites and Berkeley’s On the Same Page program":
    • Progressive

      I’m a big fan of Chris Mooney’s thesis in “The Republican War on Science”. For eight years we had know-nothings in charge on stem cells. And now there are people who claim to be of the left who are doing their damnedest to give the Christian right a run for their money. Let me tell you that I am sick of special interests like this “Center for Genetics and Society” (which has no geneticists) telling me as a woman whether I can look at MY OWN BODY. I could give less of a damn about their reflexive fear and hatred and ignorance of science and medicine.

      Don’t want an abortion? Don’t have one. Don’t want genetic testing? DON’T GET ONE. It’s that simple and it’s about choice.

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    • I am not trying to hide anything – I declared in my original post that I have a financial stake in 23andMe (a small one, as I am an advisor and not an investor) and thus it’s conceivable that I stand to indirectly benefit if Berkeley’s plan to use genetic testing in teaching succeeds because of knock-on effects this might have on the genetic testing industry. However, I would like to point out that I routinely turn down lucrative offers to advise biotechnology companies. 23andMe is the only company I advise, and I have done so for years without any compensation. I do not adjust my views on important (or unimportant) issues in light of what is good for the company. Rather I consult for 23andMe because I believe deeply in their mission to democratize genetic testing and to give individuals access to and control over the information in their DNA. I am aware that as a result of this association some people will be inclined to discount anything I say on the subject. However I would hope that instead of viewing me as hopelessly compromised, people would simply engage what I have to say on its merits.

      I also want to reiterate I am not a reflexive DNA testing cheerleader. I think there are a whole host of complicated ethical, social and scientific issues surrounding genetic testing, and real perils in the misuse of the data both on an individual and group level. As is evident, I think the potential benefits outweigh the risks. But I also think the biggest danger comes not from misuse of the data, but from misunderstanding it. And it is the potential of the Berkeley program to address this danger that makes me so enthusiastic about it.

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    • Carol Michael

      This is an offensive invasion of the privacy of these students. What of their constitutional rights. To say they can opt-out is unsatisfactory. A student at this University would most likely feel intimidated to opt out. But maybe not. May we see protests, sit-ins, boycotts, marches and every other peaceful means known to Berkeley students forever. We expect that of them now.

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    • ConflictO'Interest?

      Like many molecular biologists at UC Berkeley who work and advise in both in the “publicly assisted” and private sector. The question arises: Does Michael Eisen have a personal financial stake in this campaign popularizing genetic testing? I would ask him to reply honestly. Though I agree that thoughtful people should not necessarily turn away from a technology they understood (and they should have done their homework to find out UC protocols were with this program), there is a legitimate concern about how this information is to be used.

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    • I think the rhetoric was appropriate (although I regret calling them Luddites – the Luddites were trying to defend their way of life, which I can respect – people who are reflexively opposed to genetic testing are generally just being paternalistic). Without even bothering to inquire about what the program’s goals are or how it would be implemented, these groups fired off press releases attacking the plan and demanding that it be stopped. Their entire attitude is antithetical to the way that academia should function, and they should not be taken seriously unless they want to engage the issues more constructively.

      That said, it is now incumbent upon Berkeley to prove the skeptics wrong. This could be done well or it could be done poorly. I have great confidence in Jasper Rine to do his part well, but this will require more than just one professor. The risk is not that somehow students will be harmed by finding out if they are lactose intolerant, but rather that a great opportunity to get them to think deeply about genetic testing will have been lost. To do my part, I plan to teach a Freshman seminar on the science, sociology and ethics of genetic testing, and I’d welcome any ideas people have about how to do this and what issues we should address.

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    • Tiddilywinks

      This is a pretty reactionary post, which employs the same type of rhetoric used by tobacco companies to attack concerned citizens, or oil companies to attack environmentalists (what hippie isn’t self-appointed?), etc.

      Calling your opponents Luddites? Often the people most active in technology issues are technologists concerned about implications of their own creations.

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