UC Berkeley has decided to offer its 5500 incoming freshmen of the College of Letters and Sciences the chance at a free genetic test. And all hell has broken loose. Well, maybe not all hell but a bee’s nest has been stirred up at the very least.
On one side are the folks who see no problem with this. Knowledge about oneself is the most important thing and any legal route to more knowledge is good. These tests are also a great way to teach college students about the wave of genetic testing that is about to wash over them and to get everyone talking about genetic tests.
On the other side are people more leery of genetic testing. Genetic tests do not give as much information as advertised and are really hard to understand. They also worry that students will feel pressured to take the test and so it won’t be truly voluntary. Add to this concerns about genetic privacy, effects on student behavior, and acclimatizing people to genetic tests to support the genetic testing industry and you begin to see why there was such an outcry.
What I want to do is add my two cents. After looking over the details and thinking about it, I think this experiment is worth doing and as safe as anything like this can be. I also think it is an excellent way to get people more interested in and talking about genetics and genetic testing.
Any of you who have read some of my previous stuff might be surprised by this. I tend to be pretty conservative when it comes to genetic testing because I think by and large it is oversold. Most genetic tests can’t tell you as much as the companies tell you they can. They are hard to understand and you need a deep understanding to really figure out what they can and can’t tell you.
But this isn’t true for every genetic test. Especially not for the one that UCB is offering.
The test will look at three different genes to figure out whether a student has a DNA change that might affect their ability to:
1) Digest lactose (lactase gene)
2) Metabolize folate (MTHFR gene)
3) Flush when they drink alcohol (ALDH2 gene).
By and large these tests are pretty benign but still offer great opportunities for discussion.
For example, most people in the world can’t digest dairy as an adult because their lactase gene shuts off. Around 25% of people have a DNA change that keeps the gene on into adulthood. The test will reveal whether a student has that change or not. Hardly life altering stuff!
But it does offer a chance to talk about genes and genetic tests. Many of the students who test as lactose intolerant won’t be. One reason is because the gene will shut off at different times for different people. This is a true teachable moment.
Especially since as a science educator I know that what makes science most interesting to a student is science about that student. Experiments that look at a student’s own nucleus are much more powerful than those that look at an onion’s or even some other person’s. Same thing with DNA isolation and a host of other experiments.
The kind of genetic testing being done at Berkeley will excite and interest many of these students in genetics and genetic testing. This is critically important if we are to have a scientifically literate public capable of making the best informed decisions about genetic tests, vaccines, GM foods, evolution, cloning, etc. We also need such a public if we are to compete globally.
But the test is not without some risk. There is always the danger that someone’s private DNA will be stolen and used against him or her. Another risk is that by testing such user friendly, well characterized DNA markers these students will come away thinking all genetic tests are like this. They’re not and hopefully this will become clear in the seminars and discussions that accompany the testing.
Now if the test had been on any genes that are disease related and/or not well characterized, I would have been opposed to this testing. In my opinion, the benefits to society and the students would not outweigh the risks to particular students.
In fact, I almost switched my vote back to opposed when I found out they are testing the MTHFR gene. This gene has been implicated in a number of conditions including an increased risk for miscarriage. What changed my mind is that this is one of the few genetic tests where you can actually use the information to make a simple life style change to counteract its effects. A little extra B vitamins is all it takes to counteract the effects of having this marker (if the marker leads to problems in that student’s particular case).
I don’t want people to come away thinking I am opposed to people knowing more about themselves. I’m not. But a fact without understanding is not knowledge, it is just a fact. And given the complexity of many of these genetic tests, a set of facts is all most people can get.
An article from Inside Higher Ed:
From the UCB “On the Same Page” site
From the Council for Responsible Genetics (check out “Current Developments”)
Article from a Berkeley professor who opposes doing this