BERKELEY VS THE BILL: Proposed legislation could interfere with U.C. Berkeley's plans to analyze student DNA.
Image: Wikimedia Commons
More In This Article
-
The Best Science Writing Online 2012
Showcasing more than fifty of the most provocative, original, and significant online essays from 2011, The Best Science Writing Online 2012 will change the way...
Read More »
State legislators have lined up a bill aimed at preventing the University of California, Berkeley, from executing a controversial program that asks new students to participate in genetic testing as part of a fall semester orientation program. But even if the bill becomes law, it will likely be too late to halt DNA collection because campus officials began mailing saliva sampling kits to about 5,500 incoming freshmen and transfer students this week, whereas the legislation cannot come up for a vote before August 2. U.C. Berkeley's fall semester begins on August 19, with welcome activities from August 23 to 27. Jasper Rine, the Berkeley biologist heading the genetic testing project, has scheduled an on-campus public lecture for September 13 to discuss the aggregated results of students' tests.
The proposed legislation, as it appears currently online, directs the University of California system (including Berkeley) and the California State University system to "refrain from making an unsolicited request to an enrolled or prospective student of that segment for a DNA sample for the purpose of genetic testing," but does not prohibit "a licensed health care provider in a university facility from performing genetic testing and counseling in the course of a patient’s medical care."
The bill, authored by Assemblyman Chris Norby (R-Fullerton) who represents the 72nd district, also requires universities to report the total costs of any genetic testing efforts so that an equivalent amount can be deducted from the school's funding.
The bill's authors, however, plan to update the language, according to an Assembly Republican Caucus Office of Policy staffer who asked not to be named. First, the meaning of the term "unsolicited" will be clarified. Although the Berkeley program is voluntary, all new students will soon receive via mail a saliva sample kit, informed consent document, and background material addressing relevant scientific and ethical issues, regardless of their intent to participate. The bill's authors want to label this approach as unsolicited. Second, the bill will no longer require universities to report the cost of genetic testing itself, but rather the cost of any legal judgments or settlements that arise as a consequence of genetic testing on students.
The bill was introduced as an emergency measure and would take effect as soon as it passes, but is currently sitting in the State Senate. Members of the legislature recently entered a summer recess and will not return until August 2. When they reconvene, the Senate Rules Committee will determine which committees should hear the bill, if any. If the statute secures majority votes from those committees—which are expected to be those charged with health and education—it will further require a two thirds vote from the entire Senate and subsequently another two thirds vote from the full Assembly to pass.
Mark Schlissel, dean of biological sciences at Berkeley and one of the orientation program's organizers, says the university has made no changes of any kind to its genetic testing program in response to the bill, although it concerns him.
"The bill is concerning in that it appears to be a legislative atempt to dictate aspects of the curriculum at the university," Schlissel says. "The notion that an individual legislator can object to something we are doing on a curricular basis and turn it into legislation is chilling because educational policy is the privy of educators."
Schlissel adds that right now he has no specific plan of action should the bill pass. "The timing of things are such that the envelopes are going out to students right now and the California legislature is taking a summer holiday," he says.
See what we're tweeting about
17 Comments
Add CommentThe legislature and its proposed legislations in California and other places in the US seem to be too late to cope with some issues like that problem talked above, for which UC Berkeley easily avoid this bill before it is passed. Maybe it is the problem of legislation system in the US, which needs certain reform to respond to some emergencies.
Reply | Report Abuse | Link to thisAs a Cal alum, it is amazing how California legislators can draft a bill so quickly to prohibit a State University from running a completely voluntary experiment but the same legislators cannot pass a budget to keep the state running! Oh, politics!
Reply | Report Abuse | Link to thisSeriously? So they don't want the university to pursue it's missions of teaching OR research because the mere thought of genetic testing makes some legislators squiggy?
Reply | Report Abuse | Link to thisSeriously? So the UC is not supposed to pursue either it's mission of teaching OR research because the thought of genetic testing makes some legislators squiggy? Really? I'm so glad they have time for this nonsense what with the whole not doing their job to pass a budget thing.
Reply | Report Abuse | Link to thismiss_emelia - Not to be paranoid or anything, but in some future unimaginable government administration that may have an agenda that crosses with the interests of many humans like, for example, the U.S. government during the Viet Nam war, the Chinese government during the democracy protests at Tiananmen Square, or some future government dealing with severe overpopulation and food, water and power resource shortfalls. governmental access to personal DNA databases may result in some undesirable actions: genetic extermination, for example.
Reply | Report Abuse | Link to thisSeems impossible that our own government might take such horrible actions, though, doesn't it? Any such concerns are probably futile, anyway...
jtdwyer:
Reply | Report Abuse | Link to thisAre you reading-impaired or are you willfully ignoring the word VOLUNTARY in the premise of the UCB collection?
Sgt Coldwar - No Sarge: I can read, talk and think for myself - kind of like the CIA in Southeast Asia. What does the cooperative conscription of naive young adults have to do with facilitation of governmental misconduct? Perhaps you don't see the 'big picture' at your level. Need to know, you know.
Reply | Report Abuse | Link to thisThe UC group does not teach, say, "reading, writing, and arithmetic" but instead teaches how to achieve tenure then lead the paying customer/students in riotous behavior. Two of my 4 children either currently attend or has graduated from an UC campus. Neither child #3 nor #4 will go to UC (although fully qualified) because of the decline in quality. They instead are headed for out-of-state Universities.
Reply | Report Abuse | Link to thisTypically in such collection identity is kept secret, so there is no knowledge of the specific person a sample came from beyond age, gender, ethnicity and the like. The informed consent form provided likely explains what information will be used, how privacy will be safe guarded, and what sorts of information will be sought using their genetic sample.
Reply | Report Abuse | Link to thisThere has been recent controversy including a lawsuit by an indian tribe over use of their genetic information in ways they were not informed of in advance. Even this was not intentional, although they won the suit. Lessons like this are not lost on scientists and consent forms were immediately modified to, as simply as possible, outline the uses and potential uses for the samples. I find it rather ironic that fear mongering seems to be ruling the day here particularly from the government...
E-boy - I don't think an typical collection of DNA has yet been established, but I would advise any naive contributor against presuming that their information will be kept secret.
Reply | Report Abuse | Link to thisIn this case, the intent of this specific DNA collection is that it be used by the student in subsequent years in the study of personalized medicine - not some anonymous statistical sampling. In this case the DNA test results would have to be recorded with sufficient personal identification data to at least return the results to the student.
Unless it was specifically stated, I wouldn't even presume that the personal DNA data would not be maintained in a database for convenient retrieval by the student in subsequent years. I wouldn't even presume that the database would not be distributed to the students' professors in subsequent years, even copied to professors' laptop computers used a coffee shops.
Undoubtedly collection of personal DNA data will eventually become commonplace in the medical industry. Personal medical information is currently being distributed by doctor's offices to small companies that handle outsourcing services such as insurance claims and billing. Any data once collected is subject to further distribution and replication far beyond any original intent.
Your faith that institutionalized use of personal information is at best misplaced and based on current administrative policies. This voluntary collection of naive young students' personal DNA data is simply a precursor of eventual common practices in the medical and potentially governmental agencies.
Certainly no one would deny access to future personal DNA data by the National Security Agency, for example, in pursuit of international terrorists - that is if anyone was aware of any access for any purpose.
I am a UC Berkeley student, and when I found out about this I was upset because it wasn't done last year, when I was an incoming freshman. I would personally like the option to do this genetic testing be extended to the entire campus, because I am personally curious about the results. Also, the word "voluntary" nullifies any argument about invasion-of-privacy, just like posting a picture on Facebook nullifies anything you might say to someone for looking at that picture, since you voluntarily put it in the public domain. I think that legislator is just afraid of progress, and should probably keep his opinions out of discussions of things like funding for science and education.
Reply | Report Abuse | Link to thisThere is some quote which says about power "if you abuse it, you lose it." That a legislature should not have the power to determine curriculum is good, and I would certain hate to see that happen (think conservative Texas Board of Education), but UC-Berkeley pushing this at least ethically-challenged "voluntary" DNA testing of incoming college freshman then claiming the privy of curriculum power is non-sensical.
Reply | Report Abuse | Link to thisThat the always ethically-challenged politicians find themselves in a superior ethical position to UC-Berkeley is quite a feat, making UC-Berkeley eligible for the 2010 Darwin Awards.
fisixisfun - Then we won't worry about a future of overpopulated starving humans being excluded from access to food, etc., by their genetic blemishes: it could never occur in such a perfect world as ours. No place for genocide here, now or in any future reality.
Reply | Report Abuse | Link to thisI like the idea of genetic testing tied to individual identity because when the revolution comes and I seize power it will be much easier to determine who to eliminate.
Reply | Report Abuse | Link to thisjtdwyer is just much more informed than the rest of you. (insert evil laugh here) The really funny thing is that most of you think I'm joking.
bucketofsquid - Unfortunately, thanks. Keep me in mind for a cabinet level post - maybe something in counterintelligence...
Reply | Report Abuse | Link to thisMailing saliva sampling kits to these kids, and it's voluntary. So there's no control over where the sample actually comes from. They could sample their dog, or they could go to the city and look for the filthiest bum they can find, and offer them a quarter for a sample of their saliva.
Reply | Report Abuse | Link to thisAnd for the conspiracy minded, when they do these vast DNA collections, it makes you wonder what they're looking for .
We'll have to see who disappears during the Fall semester.
Although it doesn't have to be a nefarious conspiracy.
Maybe they'll discover the genetic link for good grades, so then they can exclude future students who don't match the genetic profile of top students. I mean, it would be better for those students who would probably have a hard time and just drop out anyway, right?
The benefits of DNA research far out weight any personal issues.
Reply | Report Abuse | Link to thisBetter genes, better life, would anyone honestly choose to be less?
I'm more concerned about killer robots and smarter than people computers, than people with better DNA.