SACRAMENTO – Some called it poorly conceived. Others noted the “benign” nature of the information being studied. But most at Tuesday’s hearing regarding U. California-Berkeley’s student DNA testing program before members of a California State Assembly committee agreed the campus should have thought through the program’s implications more thoroughly.
The hearing, held by the Assembly’s Committee on Higher Education, spanned three hours and allowed experts and academics to present issues that ranged from understanding the origins of this year’s “On the Same Page” program to the legal and ethical implications of the program, which allows incoming students to the campus College of Letters and Science to submit samples of their DNA for analysis.
The program has spurred heated debates and media attention across the country since it was announced in May. The vice chair of the committee, Chris Norby, R-Fullerton, authored a bill in response to the program that, if passed, would prohibit CSUs from collecting their students’ DNA, urge the UC to do the same and require the UC to file quarterly reports on the total costs of any programs that request students submit samples of their DNA for genetic testing.
UC Berkeley Dean of Biological Sciences Mark Schlissel and campus genetics professor, Jasper Rine, began Tuesday’s debate about the program by explaining how this year’s program topic was conceived, the program’s main goal – to engage students in a a dialogue about the “emerging field of personalized medicine” – how the campus went about reaching out to students, how the campus plans on maintaining student confidentiality and privacy and what the program plans to do once the samples have been analyzed.
Schlissel and Rine assured the committee that students had to submit consent forms, which included information on genetic testing, in order to participate in the program. In order to ensure privacy, they said, two bar codes were included in the packets: one for the student to keep and one for to be attached to the sample. Of the 5,000 students who received the testing kits, about 350 to 400 have agreed to participate so far.
Names of students who chose to participate are not to be associated with sample barcodes or listed anywhere, and only the student will know their own code. Once the samples have been analyzed for three genetic variants – the ability to tolerate alcohol, metabolize lactose and absorb folic acid – they will be destroyed.
“In our opinion, controlling who has access to your genome is very important,” Rine said. “Three common variants can simply not be used to identify students.”
Seminars and panel discussions on campus have been planned to coincide with the program and to address various issues related to genetic testing.
A prominent concern raised by speakers at the hearing was whether the campus will truly be able to guarantee the confidentiality of the student samples. Some pointed out that the campus employee who opens packets submitted by students would be able to discover the identities of the anonymous samples because the packets will include student signatures on consent forms along with the samples.
But Schlissel and Rine explained that students were sent information in their packets about genetic testing, that the data used would in no way be used for scientific research and that only three out of some three million genetic variants among human genomes would be tested for, making it virtually impossible to identify individual students.
“Even if the information were hacked, I am confident as a scientist that none of the data would be identifiable,” Schlissel said.
Questions were also raised about the consent forms that students were sent. The form names two companies that students could choose to have analyze their DNA samples if they do not wish to do so through the campus program – information Schlissel said was included to simply give students more information about the scope of genetic testing. But many at the meeting, including chair of the committee Marty Block, D-San Diego, questioned why only two specific companies were mentioned.
“Naming two companies on the consent forms implies that the University of California thinks these are the top choices that the UC is endorsing,” Block said in an interview after the hearing.
Though the student samples will be destroyed after they have been analyzed, no plans have yet been made for what will become of the data collected from samples once the program is finished and students have received their test results. Many at the hearing said they feared what else this data would be used for.
Schlissel and Rine said the data may end up being used in an academic paper on the educational process of the program – a possibility they said was explained in student packets – but that the data would not be used for any scientific research paper.
Still, some at the hearing said the uncertainty about what the data will be used for, as well as the uncertainty about who will conduct the genetic analyses, was cause for concern.
“It seems a little troubling that many things are yet to be determined,” Block said.
Students’ ability to fully understand what they are consenting to by participating in the program was another topic debated. Hank Greeley, director of the Center for Law and the Biosciences at Standford University, compared UC Berkeley’s program to a similar genetic testing program for medical students at Stanford, a program that he has objected to. He said there is a risk, in both programs, that students might misinterpret the results of their tests and make misinformed health decisions.
“These students, even highly educated students, might make mistakes,” Greeley said.
Several speakers during the hearing said students should be educated first about the various implications of submitting DNA for testing before they are allowed to agree to such tests. Many suggested that due to the number of issues posed by the program, UC Berkeley should delay its implementation. Block said after the meeting that this decision should be made by the campus and that the Legislature should not get involved.
By the end of the meeting, most speakers, including Rine and Schlissel, agreed that the campus could have gone about organizing the program differently and that it is important to continue the discussion of genetic testing in personalized medicine.
“I don’t think the UC professors involved have anything but the best intentions in mind,” Block said after the hearing. “But I fear they made some mistakes along the way.”
A hearing will be held Wednesday to address Norby’s bill before the Assembly’s Education Committee. Another meeting Wednesday with campus officials and the state Department of Public Health will review whether the program aligns with federal Clinical Laboratory Improvement Amendments standards, according to Schlissel.