Privacy Concerns
Although all DNA samples collected by Berkeley will be incinerated after testing is complete, the results of those tests will be preserved as data sets on computers. But the tests results will not be useful for research purposes, says Michael Eisen, a Berkeley biologist who has defended the "Bring Your Genes to Cal" program on his blog. "It's such a small sample of alleles that are not of significant research interest. I could probably tell you in two seconds what the results are likely to be—it's completely predictable."
Schlissel says the data from the Berkeley tests will only be used for educational purposes, explaining that Jasper Rine—the Berkeley professor of genetics heading the project—will aggregate the test results for a presentation during orientation. "If we provoke the kind of interest and discussion that we hope, we might write about it as an educational project," Schlissel adds, "but not as a scientific study."
Stanford cannot use the students' physical DNA samples for research because 23andMe destroys DNA samples after testing, and Navigenics—although it may preserve the sample for a year—eventually does the same (also giving customers the option to request earlier destruction). The tests results, however, will be maintained on computer servers at the respective personal genomics companies. The creators of Stanford's new genetics class also claim their project is educational, and that students' test results will not be used in research. Stanford will, however, survey student attitudes to learn whether or not analyzing their own DNA facilitated learning about personalized medicine, says Charles Prober, senior associate dean for medical education. "We'll be conducting an educational study," Prober says. "If you choose to have your own genotyping done, will that make the information [one learns] stick more? That's what we want to know."
Student reactions
The third main ethical issue raised by bioethicists is how students will react to the results of their genetic tests. Specifically, critics are concerned students will lack the proper context and knowledge to interpret their results and might make unwise lifestyle decisions.
One of the gene variants Berkeley's project identifies, called aldehyde dehydrogenase 2 (ALDH2), codes for an enzyme crucial to breaking down alcohol in the body. People with this particular variant may experience facial blushing and nausea when they drink. "If they learn they don't have the gene [variant] that makes them flush, they might think they can drink more," Annas says. Others argue that most Berkeley students will already know what their genetic tests tell them, because the conditions in question—like facial blushing and lactose intolerance—are so common and noticeable. "First of all, it's hardly like they need an excuse to binge drink," Eisen says. "Probably most people are already aware of their condition."
To help students understand their test results, Berkeley is relying on a series of lectures and discussions during freshmen orientation. But critics say that is not enough. "I worry students won't understand or would easily misconstrue the information they are being presented," Caplan says. "A meeting in an auditorium is not the way to discuss genetic testing at this point in its evolution." Instead, critics argue that Berkeley must provide one-on-one genetic counseling to all participating students.
According to Schlissel, students will have the option to meet one-on-one with himself, Rine or a genetic counselor—but there is no mention of genetic counselors on the program's official Web site or in the informed consent form. "They say Rine would be available for counseling—that's like insane," Annas says. "The students are going to tell their professor? It's supposed to be confidential."
Meanwhile, before students in Stanford's summer class can choose to participate in genetic testing, they will attend two class sessions intended to provide them with adequate background on the potential risks as well as the relevant ethical and legal issues. Once the results are in, students will have the option of one-on-one confidential genetic counseling offered by both Navigenics and 23andMe at no extra charge. Still under negotiation is whether Stanford's own genetic counseling program will offer additional services. Alan Schatzberg, a Stanford psychiatrist on the original task force, also offered to counsel students.
Stanford v. Berkeley
Another big distinction between Stanford and Berkeley's projects are the respective student populations involved, emphasizes Salari, the grad student who originally proposed the Stanford summer course and attended Berkeley as an undergraduate. "The Berkeley population is 17 to 20 years old. At Stanford they are all in graduate or medical school. They are a generally older, more mature population. I'm proud of my alma mater for organizing their program. I think it's a good idea, but it's very different from what we are doing."
Not everyone at Stanford agrees that graduate and medical students are better able to interpret genetic data, however. "I don't like the idea of subsidized genotyping for students," says Hank Greely, director of the Center for Law and the Biosciences at Stanford Law School. "I think it's less concerning when the students are medical students and PhD students than when they are freshmen, but the fact you are smart and know something about the Krebs cycle doesn't necessarily mean you know genetic risk very well."
"Those of us on the task force who opposed it are strong supporters of genetics, just genetics done carefully," Greely adds. "I think it's telling that all the ethics and policy people were largely against it but the basic science people were the most supportive."
Most critics of both university programs applaud innovation in teaching personalized medicine and genetics, even if they think the projects are poorly designed and full of ethical pitfalls. "I agree with the idea of looking for more hands-on experiences," Berkeley's Tallbear says. "They just collectively seem to be unaware of the controversial nature."
Penn's Caplan called the Berkeley approach "a clever class project, but I think they could have done it in a manner that was more sensitive to flaws in genetic testing."
Greely says that neither project is reckless or grossly foolish, but he advises against them. "There's been the assertion that students will be more engaged if they are studying their own DNA," he says, "but I haven't seen any empirical evidence for that. How significant of an improvement would that even be? I think it's a mistake."
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9 Comments
Add CommentRather than doing this for incoming freshmen, I think this would be a better program for returning sophomores. This has the advantage that freshmen could be around students for a year who have already undergone testing before deciding whether they wish to undergo testing themselves.
Reply | Report Abuse | Link to thisThat way, students can gain a better idea of whether the information learned through genetic testing will improve or detract from their quality of life. (In the case of the three traits tested for in the Berkeley program, it's hard to see that kind of knowledge harming a person's quality of life, but testing for other traits might.)
--Dave
I thought California and its universities were in fiscal crisis. This is a sign that the universities are not too skilled at prioritization given their limited funds. Bankrupt entities don't even entertain the thought of starting new exotic programs at time of tight budgets.
Reply | Report Abuse | Link to thisTwo points:
Reply | Report Abuse | Link to thisOne: I wish I could take the grad course -- personalized medicine is of great interest to me.
Second: an excellent case example of social innovation, at many different levels and latitudes involving higher education, biology, technology, law and human rights, nicely mediated and reported by professional media.
at this time the 99 dollar option on sequencing is just a swag...they need the 2-4 billion base pairs...to make any real progress...price should continue to drop....
Reply | Report Abuse | Link to thisi also think its very interesting that college students don't have the fear of being sequenced.....i'd do it in a heartbeat.....
The average American university can't even protect students from spam, not to mention burglary,assault, rape & murder --although most of them are right on hand if someone lights up a joint. If I can't trust the U to keep my social security number private, I'm surely not going to give them my DNA.
Reply | Report Abuse | Link to thisAn interesting article allowing comparison between the two different programs. The Stanford one seems potentially to have some comparability with other samples, as testing is carried out by a specialist firm over the range of characteristics normally tested for. The Berkeley study instead focuses on a narrow range of characteristics that may be of interest to students. The Stanford study seems to have identified and made some effort to address objections to the program. As to the article's main question, whether the material would be more meaningful to students able to study their own data, my tentative answer is "hell, yes." Both programs appear very worthwhile as long as the effort is made to orient the students to the meaning and limitations of the information.
Reply | Report Abuse | Link to thisennui - They were probably snobby when you told them because they were smart enough to know that you were wrong...
Reply | Report Abuse | Link to thisWayne Williamson - College freshmen are probably unaware of the potential risks of possible future administrative use of their detailed genetic characteristics. However, any such concerns are probably futile...
Reply | Report Abuse | Link to thisSome future state legislature, once they realize they funded this effort, will seize the database. Usage will then be determined by Pols. not school egg-heads.
Reply | Report Abuse | Link to thisThought out the possible objections... Indeed not.