Update 08/13: AB 70 was defeated. However, the Bring Your Genes to Cal program was altered because they planned to do the analysis in Berkeley labs, which are not certified medical labs. In accordance with state demands the students will not receive their own results.
Legislation usually moves along at a crawl, slowly, glacially -- except if you're the California State legislature trying to corral the University of California, Berkeley's personal genomics walkabout offered to incoming freshmen. The state bill AB 70 was introduced in December, 2008 to encourage transparency on how school districts classify "English learners" to "proficient".* Now, the text of AB 70 the "English learners" bill has been parasitically devoured and replaced with text to impede the University of California, Berkeley's program for incoming students, known as: "On the Same Page: Bring Your Genes to Cal".
How the State Tries to Come Between Cal...and Your Genes
Like many universities, freshmen are welcomed to UC Berkeley with some thematic program. Historically that's meant they all read a book, for instance last year they read Omnivore's Dilemma, by Michael Pollan. This year they decided on a more interactive learning experience, asking incoming Freshman to spit in a cup and submit that for analysis of lactose, alcohol metabolism, and folate gene variants. The idea seemed fresh and relevant, and Berkeley went forward with it apparently without much internal debate. Certainly getting students involved in their own health can't be bad can it?
Some people actually thought it was bad, however, and eventually the state legislature got involved -- very late to the game, of course. But as the university mailed out saliva spit kits to students, AB 70 suddenly gained what seemed like unprecedented speed and "urgency". If passed, it will be "enacted immediately."
The original AB 70 proposed adding a section to the education code requiring that school districts report their criteria for assessing English proficiency. The bill languished until being amended June 24, 2010. The amended title reflected not-too subtle changes. The old sponsor and bill purposes were simply crossed out, and the new sponsor and purpose inserted so it read:
"DuvallNorbyEnglish learners.Public postsecondary education: genetic testing."
That's how an English learners bill morphed into a bill to stop UC Berkeley from teaching about genetic testing.
Legislation 101
English learners text was crossed out:
....This bill would require the department, as part of its duties in administering the English language development test, to gather from each school district that has one or more English learners the criteria that the district uses for the reclassification of a pupil from English learner to proficient in English and to summarize and report the criteria it receives...
And in its place, text warning about allowing "On The Same Page: Bring Your Genes to Cal":
- Collecting, testing and storing genetic material presents "unique challenges to protecting individual privacy".
- Medical testing "subjects" should receive "substantial" written and verbal explanation before supplying consent
- Students "may feel coerced to participate in official activities involving widespread genetic testing"
- A 2006 GAO report showed that tests are "unproven, misleading, meaningless.."
- Students could "suffer consequences later in life" because of privacy breaches.
The June 24th version demanded that the school report quarterly, all the costs of the "solicitation" so that the state of California could recoup those expenses. The trouble with that legislation was that the solicitation already happened and was funded with a gift (probably, the funding is unclear). (The state only provides Berkeley with a small percentage of its funding.) So the August 02 amended version of AB 70
struck out "prohibits" and entered "requests" instead. The August version also struck out the demand for accounting of "unsolicited requests", and replaced that for a demand to account for "legal judgements or settlements resulting from violations of the informed consent requirements".
On Different Pages
The August amendments show the state adjusting to meet the realities of the program moving forward. It's a learning experience for all. Clearly the legislature is trying to wrap its head around the project, and adjusting as needed. As is Berkeley. As are organizations who oppose the program.
The text of the bill reflects very closely the rhetoric of the Massachusetts based Council on Responsible Genetics (CRG). Their primary concern seems to be privacy, and their multiple letters to California legislators practically dictate the content of AB 70. But as they gather more information about the project, they too change their rhetoric. In their most recent letter to California legislators, the Council For Responsible Genetics joined with the ACLU, Privacy Rights Clearinghouse, The Electronic Freedom Foundation and others, urging the legislators to "request a full accounting" of the "On the Same Page: Bring Your Genes to Call" program, specifically issues of conflict of interest, funding, privacy, and data confidentiality.
The Berkeley program certainly brings relevant topics to the fore, and who can challenge the importance of this? But Berkeley scientists and the Council on Responsible Genetics have stuck doggedly to their talking points. Scientists advocating the program stress the need for education about genomics, and accuse critics of being anachronistic and paternalistic. They stress individuals personal right learn genetic information. Therefore, they would argue, this is a relevant topic worthy of the attention of the program.
Certainly healthcare in America is at such a nadir that anyone with half a brain in their head who has visited a doctor lately would agree that giving individuals more information to take more ownership of their own healthcare would be great. Personal genomics could give such insight, democratize information, and benefit health consumers. But this is one (there are others) big hitch. Direct to consumer genetics testing (this is related) walks a fine line between being innocuous information and a "medical test". Bring Your Genes to Cal proponents simultaneously push the importance of the students learning about genomics - and by pushing this they get necessary support, while at the same time belittling the relevance of the tests and their results - so as not to attract unwanted attention.
Meanwhile, critics are focusing on the very issues that the University is trying to downplay. CRG insists on repeatedly labeling the Bring Your Genes to Cal tests "medical tests" in order to prompt alarm and greater scrutiny. The critics dwell on privacy, data confidentiality, and interpretation of data. To me, if genomics data is important enough that it's worth building this program around (as innocuous seeming as these variants may be), than it's important enough for the critics' issues to matter -- even if the involved scientists twist themselves into knots to avoid those discussions.
The state, for its part, is trying to respond, quickly at that, without having a clear handle on the issues. Perhaps they yearn for 2008, when AB 70 was stymied in controversy over adding a webpage to assure transparency in schools' English Learner programs.
------------------------
*AB 70 was also once a bill about state dams.
