The University of California Berkeley was planning an innovative and somewhat controversial “common freshman experience” for its incoming class. Rather than forcing everyone to read some book no one really likes written by their professor (*cough*Purdue*cough*), they decided to let freshmen voluntarily be tested for various benign yet interesting genetic traits. It’s purpose was to start dialogue on the future of genetic testing and personalized genomics.
However, the California Department of Public Health has recently decided that students are not to receive their personalized results, and only aggregate data can be presented:
“They said that we were providing students with information that could affect the treatment of disease or the evaluation of health,” said Mark Schlissel, dean of biological sciences in Berkeley’s College of Letters and Science. “We disagree with the California Department of Public Health.”
According to the department, laboratories conducting clinical testing — which can diagnose a disease or monitor treatment — must be licensed and have certification for reliability and accuracy. Excluded are labs running samples for research and teaching purposes, but the Department of Public Health concluded that Berkeley’s project does not fit these exemptions due to the potential for medical interpretation.
The university’s collection of genetic samples targets only three genes: metabolism of folate, tolerance of lactose and metabolism of alcohol. Jasper Rine, UC Berkeley professor of genetics, genomics and development, said the gene variants are innocuous.
“We considered all possible misuses of this information,” he said. “We decided we could manage the risk that a student could learn that they have an upset stomach when they drink milk.”
[…]“It opens up a whole lot of questions,” [Schlissel] said. “Who has the authority to tell an individual what they’re allowed to know about themselves?”
As a geneticist, this is an interesting situation to me. If I was a UC Berkeley freshman, I would be extremely disappointed. One, I’m a genetics nerd – I’d love to know what my variants were! Two, I was told I was getting personal results – maybe I wouldn’t have participated if I would have known it was aggregate data. Three, this was completely voluntary and testing innocuous traits. If I want to know this about myself, I think I have to right to know.
But on the more general topic of genetic testing, we’re right to be wary. Personal genomics relies a lot on incomplete data and probability. Vary rarely do you have a specific gene variant that results in a certain trait or disease 100% of the time. More likely, a certain variant will say you have a 20% more likely chance of suffering from heart disease, or 35% less chance of having diabetes. That and genomics is a very new field – you may have an allele that greatly increases your risk for a certain disease, but a researcher just hasn’t discovered that yet. Does having that false sense of security negatively affect how you act?
I’m eager to get my personalized genome once I can actually afford it (so, it may not be for a while). As a geneticist, I understand how to interpret the probabilities and uncertainties, and the knowledge I get in return is worth it. But the concern is that many people who rush to sequence their genome don’t understand the probabilities, and no one is there to help them. Companies will happily sequence your genome (read: Take your money), but rarely do you have a genetic counselor there to explain the results.
Is the UC Berkeley project quite as dangerous as learning about heart disease, diabetes, and Huntington’s disease? Not exactly – they were testing for traits you probably would have already known about. Most of us are aware if we’re somewhat lactose intolerant or not as able to metabolize alcohol (you may know it as the “Asian” alcohol flush reaction). But these are concerns I’m sure we’re going to be hearing a lot more of in the future, as genetic testing becomes more and more prevalent.
This is perhaps simplistic, but it seems obviously wrong, to me, to deny people information based on their presumed ability to understand that information. That seems like a potentially dangerous precedent.
LS I don’t think the intention is to deny people information, more so to make sure that it is provided in a context where it can be explained properly by a qualified professional. A doctor would never text you your HIV test results, because it needs to be handled in a responsible way, same with many types of genetic tests, they should be performed and explained by a medical professional.
I always suspected that I have some mutant gene that aids in metabolizing alcohol.http://laughinginpurgatory.blo…
Where can you can get your whole genome sequenced?
I almost went to UC Berkeley this year! And I would’ve had the same reaction as you–disappointed to receive aggregate results rather than personal ones. It would be an interesting way to know my alcohol tolerance before I actually drank any alcohol, anyway!
It’s always tough with this kind of thing – in my first year lab classes we took our cheek cells and checked under the microscope for Barr bodies. Pretty cool experiment but not necessarily the best way to find out your chromosomal gender if you weren’t aware beforehand. Similarly, things like PTC tasting is a really interesting and awesome experiment… until someone in your class finds out their dad isn’t their dad. Difficult to draw the line between “awesome” and “irresponsible” for this type of thing.
The problem with this effort is that the DNA and/or its analysis will end up somehow, at some time, in a database somewhere, and there is no control over who will eventually have access to that.It’s a privacy issue, and being the irascible curmudgeon that I am, I would not do it, and I wouldn’t allow my children to do it.
Sure you do Hurl, sure you do
Even though I agree that everyone has the right to know personal information about themeselves, isn’t there also an economical side to this? I mean, say you find out that you do have some higher probabilities for cancer or heartdisease, what happens later when you want to get a health incurance? I guess you would be obilged to inform your incurer about this? And what would happen to your rates then? I don’t know too much about about your health care system, but it wouldn’t surprise me at all if health incurance companies found a way to exploit this.
I think they can still have a “dialogue” on genetic testing without providing personalized information. Yeah, it would be cool to know, but just seems like a waste of time/money to me (okay, true, I have somewhat of a dislike for genetics, but honestly I don’t see the point).Plus, it’s this kind of thing that might lead to genetic testing becoming a requirement to get insurance. And we don’t want to get into how ridiculous it would be for insurance companies to charge you extra for having a gene that slightly increases your risk of so-and-so disease.
I’m going to be a sophomore at UCB this year. I had heard that they were genetically testing the freshman, but I was under the impression that it was mandatory and for a research study not directly to the benefit of the freshman. I was vaguely against it before since it seemed unethical, but now that I understand it better, I’m disappointed that they aren’t going to do it.
Knomehttp://www.knome.com/Only $40000Partial sequencing (ie. 1/2 million selected SNP’s) is about $500 @ 23andme http://www.23andme.comI’ve had it done. The most valuable aspect is having access to all your raw data.
I’ve had it done as in the $500 partial version not the whole sequence,… I’d love to be that rich!
Unfortunately it isn’t a dangerous precedent per se – A few weeks ago the FDA and congress started having hearing on having “direct to consumer”genetic tests regulated” as they constitute a diagnostic “medical device”, so I think the Berkley testing issue is an offshoot of those current political issues. Largely the genetic tests aren’t actually diagnostic, and most of the DTC companies are quite responsible in presenting the limitations of the results, and many of the people that are getting tested with these large scale genetics tests are getting them for non medical reasons. eg. Ancestry. People who use these kinds of tests for ancestry (rather than medical) don’t really want to have to visit their Dr to get tested. One fear is that regulation will result in the tests only being available on order by a GP – sensible for diagnostic DNA tests for eg. Huntingtons, but not if you want to find out whether cousin Bert actually is cousin Bert.
“We considered all possible misuses of this information,” he said. “We decided we could manage the risk that a student could learn that they have an upset stomach when they drink milk.”Really? Nevermind that lactose intolerance seems the most harmless of the three traits, I can think of quite a few ways that this could become legally relevant: someone might feed you lots of lactose as a prank, or ridicule a non-lactose-intolerant student insistent on avoiding lactose in their diet. Students might take a “not lactose intolerant” to mean they could consume milk, but actually be allergic to casein or otherwise required to stay on a restricted diet.The alcohol one is much more dangerous: most students will experiment to alcohol to some degree, and if a student consumes large amounts of alcohol knowing that their alcohol metabolism isn’t the western standard, they might become legally more culpable for what happens when they’re drunk. (Some Continental European legal systems think it’s impossible to commit a crime when really drunk: if you’re too drunk to know what you’re doing, and kill someone, they will sentence you not for the crime of murder, but for the crime of getting drunk enough no longer to be responsible for your actions).And folic acid metabolism is potentially relevant to severe birth defects. Joking about how that’s comparable to an “upset stomach” seems a bit callous to me, I must admit.It’s a pity that the court banned an interesting experiment – getting an introduction to genetics while finding out some medical data about yourself – but the argument that it’s not really medical data at all is quite stupid.
Until quite recently, it was accepted medical knowledge that terminal diagnoses should be withheld from most patients, as should most diagnoses of mental illness.Even in this 1996 case, there appears to have been an assumption that a doctor who confronted a patient’s relative’s denial of the patient’s imminent death was committing some horrible crime rather than doing her job: http://news.bbc.co.uk/1/hi/uk_…It’s a horribly dangerous precedent, I think, along with the other precedent that’s being set that you cannot engage in risky speculative investments no matter how many waivers you sign, but it’s not new: in the medical field, it’s a regression to those dark times when it was held the less patients knew, the better for them. We’ve been there, when “cancer” was considered an unmentionable word rather than a horrible disease, and “informed consent” was considered to mean that as long as you had entered a doctor’s premises voluntarily, they could do whatever they wanted to you.The court should have held differently, but the defense should also have been a lot better: yes, it’s medical information, and it might even go as far as being a diagnosis (of lactose intolerance). Yes, it’s dangerous. And we still think that being a student at a university does mean you learn about dangerous and personal things as well as harmless and general ones, at least if you want to. A student going into the experimental subjects will be exposed to some danger in the labs – working with radiation, biohazards, dangerous chemicals, heat, extreme cold, whatever. One of the dangers is learning things about yourself, whether that is your ability to smell cyanide, that potassium chloride tastes weird to you, or that you faint when you see too much blood. Or, in this case, that you’re actually not lactose-intolerant and your mother was wrong. There’s danger, and it’s worth it, and taking the danger out of education just isn’t possible.