Loss of Privacy

Last May, the University of California at Berkeley asked incoming freshmen to voluntarily submit blood samples for DNA testing. The university said it was to help determine which genes controlled the body’s responses to alcohol, dairy products and folic acid. The change in the policy isn’t that they won’t be requesting the samples, but that no one will receive individual results. Because the university must comply with regulations, they will only reveal the collective results of all students who give samples.

In response to a state Public Health Department ruling on how DNA samples should be handled, UC Berkeley scientists reluctantly abandoned the idea to have freshmen and transfer students individually and confidentially learn about three of their own genetic traits. Instead, only collective results for all the 1,000 or so participants will be available and discussed at the orientation seminars next month.

Mark Schlissel, UC Berkeley’s dean of biological sciences and an architect of the DNA program, said he disagreed with the state Department of Public Health’s ruling that the genetic testing required advance approval from physicians and should be done only by specially-licensed clinical labs, not by university technicians. The campus could not find labs willing to do the work and probably could not afford it anyway, Schlissel said. He also contended that the project deserved an exemption from those rules because it was an educational exercise.

The university offered to test the gene variations that affect people’s reactions to three substances: alcohol, lactose and folic acid. Students were asked to provide the school with a swab of cells from inside the mouth.

Berkeley officials contend that the test results would not be medically significant. But the program was controversial with privacy advocates and ethicists complaining that it presented an unprecedented and disturbing use of genetic data by a university.

Many students had felt that they were coerced into giving a saliva sample and that the program was not really voluntary. Berkeley has promised that they will destroy the samples once the tests are completed, however some questions still linger. Many are still unsure exactly how the samples will be used. They will have the data. Creating a new test would be easy. If students give up their DNA, they probably also give up how it’s used once it is turned over to the university.

Reactions are mixed to UC Berkeley’s request for incoming freshmen to voluntarily give a DNA sample to the school.

The university has said it will send test kits to 5,500 new students to analyze genes that help control the body’s responses to alcohol, dairy products and folic acid.

The voluntary tests are intended to spur conversation about the growing field of personal genomics, not predict the likelihood of disease, university officials said Thursday.

“We thought that this would be a more engaging vehicle for discussion than having them read a book or an article,” said Mark Schlissel, dean of biology at UC Berkeley.

Yes, your vehicle for discussion will be thrown back at you as most students would rather read a book or an article than have the school waste money on kits no one will use. The problem is that UC Berkeley has chosen to give the kits to impressionable freshman who may either not know it’s voluntary or think that it’s been tested before and safe. Federal regulators can’t even agree whether the over the counter test kits are safe or accurate as some haven’t been tested by the FDA.

All DNA will be collected privately, officials said. Students will use a barcode that only they have to locate their individual results, and the university said all DNA will be incinerated after the analysis is completed.

The results of the test will be put in a secure online database where students will be able to retrieve their results by using their bar code.

Ah yes, the old, “We’ll destroy the DNA, we promise,” trick. The student still needs to take the barcode to be read so they can obtain the results. What happens if someone steals the barcode or copies it?

Students also will be able to compete to win one of four much more comprehensive personal gene scans from 23andMe Inc., a Google-backed company that has been at the center of the debate over direct-to-consumer genetic testing.

So here’s the scam from the school. They get to collect and study students’ DNA and four lucky students out of 5,500 new students will win a prize.

Still, said Khoury, “if it’s packaged well, it could be a great experience.”

Yes, students. Don’t worry. We have your best interests in mind. We’re not trying to sell you a load of horse crap and call it lemonade.

There’s no mention of how these kits will be paid for. It could come from student fees, the student themselves, or the debt ridden state of California.

The story also fails to mention what is meant by confidential and private, who will have access to the data, how long the data will be kept (data being different from the actual sample), and what else the results might be used for in the future.

Hopefully, not everyone will automatically sign up for a voluntary invasion of privacy. If they do, they have no one to blame but themselves when they later find out the data wasn’t destroyed. Once the information is given, it can never be taken back.