More damning revelations about Burzynski’s “research”

Yesterday I picked apart the Burzynski clinic’s list of “scientific studies supporting antineoplason research since 2006.” Unsurprisingly, a majority of these citations were just abstracts of conference presentations lacking peer review, and a couple studies published in terrible (and even sketchy) journals. I wasn’t able to comment on specifics about the papers since I didn’t have access through my university.

A reader sent me a pdf of the first paper from Pediatric Drugs, which is even more incriminating. For one, it’s a review paper. Review papers summarize the current state of scientific knowledge about a certain topic. Sometimes they perform meta analysis on multiple papers, but they don’t always add any new information. Burzynski’s review falls into the latter – that is, it does not have any new peer reviewed data. And the studies about antineoplastons that the paper cites are from multiple conference abstracts, a patent from 1995, his report to the FDA, and an entry in a book by Nova Science Publishers (aka, also all not peer reviewed).

The only peer reviewed research paper the review cites was on the previous list – it was the one published in the crappy alternative medicine journal. I haven’t gotten hold of the paper, but commenter joshtriska summarized it thusly:

[2] A report on 18 patients with “High-Grade, Recurrent, and Progressive Brainstem Glioma” picked from 4 of his clinical trials. The conclusion states that typically less than 10% of patients with this condition survive 2 years, but in his group 22% (or four whole people) survived past 5 years. The conclusion also states that “Because a small number of patients have been evaluated, a larger study is required to confirm these results”. No kidding!

And that final paper – the one published in the sketchy as hell “Cancer Therapy” journal, was also a review:

[3] A review paper, not a study. Antineoplastons are mentioned and a line of data from one of Burzynski’s trials is included in a table. The discussion states that the data concerning antineoplastons was from from conference abstracts, and not peer-reviewed.

The Burzynski clinic is claiming that it’s libelous to say “There are no scientific studies supporting antineoplaston treatment since 2006.” But it’s not libelous because it is true. Results that lack peer review cannot be said to support something. Abstracts at conferences are not peer reviewed. Review papers do not include new, peer-reviewed data. The only published paper he has itself states that it is inconclusive without a larger study to confirm the results.

Plus, they don’t even understand what the phrase “since 2006” means. It means published starting in 2007. From that alone we throw out the first two papers. You’re left with a review paper that cites conference abstracts, and conference abstracts.

So no, Burzynski clinic. There aren’t any scientific studies supporting antineoplaston treatment since 2006. But there are plenty falsifying it.

A look at the Burzynski clinic’s publications

The Burzynski clinic has responded to the flood of skeptical bloggers with a press release. They’ve apparently fired (in so many words) Marc Stephens for his harassment, yet still plan to send attorneys after UK bloggers. I’m not sure if the targeting of UK bloggers has to do with UK libel laws, or if the Burzynski clinic is oblivious to the dozens of American bloggers also pointing out their harmful pseudoscience.

But the part of the press release that intrigued me was that they finally attempt to give some evidence for all that scientific research Burzynski has to back up his claims. Wow, a list of citations! To a non-scientist, it certainly seems impressive, what with its big words and journal names and such. But as a scientist, I was still skeptical, and decided to do some digging.

Why was I skeptical? Because not all journals are created equal. Lay people know this to an extent. It’s much more prestigious to get into journals like Science and Nature because the peer review process is way more rigorous. Your research not only has to be pretty damn air tight, but it has to make a significant contribution to scientific knowledge. We can measure how good a journal is by a metric known as an “impact factor.” It’s complicated, but generally the higher the impact factor, the better the journal.

So let’s have a look at Burzynski’s research, shall we?

1. Burzynski, SR. Treatments for Astrocytic Tumors in Chiìdren: Current and Emerging Strategies. Pediatric Drugs 2006; 8: l67-178.

Pediatric Drugs: No impact factor.

Off to a great start! (Hint: That’s sarcasm)

2. Burzynski, S.R., Janicki, T.J., Weaver, RA., Burzynski, B. Targeted therapy with Antineoplastons A10 and of high grade, recurrent, and progressive breínstem gliome. Integrative Cancer Therapies 2006; 5(1):40­47.

Integrative Cancer Therapies has an impact factor of 1.716. What does this number mean? Compared to other journals in the category of Integrative & Complementary Medicine, it’s ranked 6 out of 21. Not bad, but “Integrative medicine” sets off my Pseudoscience Alarms. Suspicions confirmed, the  journal describes itself as emphasizing “scientific understanding of alternative medicine and traditional medicine therapies.”

To quote the brilliant Tim Minchin:

“By definition … alternative medicine … has either not been proved to work, or has been proved not to work. You know what they call alternative medicine that’s been proved to work? Medicine.”

What happens when you compare this journal in a more legitimate category, like Oncology? Its rank unsurprisingly drops to an abysmal 134 out of 185.

3. Burzynski, SR. Recent clinical trials in diffuse intrinsic brainstem glioma. Cancer Therapy 2007;5, 379-390.

When this journal’s website loaded, I started laughing and dragged my laptop to my fellow-scientist roommate. It looks like a relic from the 90s. Even more sketchy and unprofessional than the white-text-on-black-background and ugly use of frames is its repeated mentioning of its “rapid review process.” I couldn’t find out anything about the editorial board other than there’s some guy in Greece you should submit things to. And after a lot of digging, I couldn’t find an impact factor at all.

Super sketchy.

4. Burzynski, SR., Weaver, R.A., Janicki, T.J., Jufida, G.F., Szymkowskì, B,G., Kubove, E. Phase Il studies of Antineoplasîons A10 and AS 2-1 (ANP) in chiìdren with newly diagnosed diffuse, intrinsic brainstem gliornas. Neuro-Oncology 2007;9:206.

[etc]

The final nine of his citations all seem to come from the Journal of Neuro-Oncology. Upon first glance, it seems legit. It has a relatively high impact factor of 5.483, which makes it 24 out of 184 in Oncology. Not bad at all, especially for a specialized oncology journal (the neuro part).

Not bad until you search the journal for articles by Burzynski. The result?

Burzynski has not published a single paper in this journal. Every single citation is an abstract from a presentation made at a conference. For those of you not in academia, we like to hold conferences where people can present their research and network. However, you’re allowed to present preliminary results that haven’t been published yet. Any scientist can submit abstracts in order to speak at conferences, and if that single paragraph sounds interesting, you get to give a talk. It’s pretty much impossible to judge how legitimate research is from an abstract (or presentation) alone, and some conferences are not competitive at all when it comes to who gets to speak – they have plenty of spaces to accept all presenters. Journals often act as archives for conferences they’re affiliated with, and will list those abstracts.

This means that none of Burzynski’s research from this journal has actually been peer-reviewed by the journal. The fact that he never actually published this data says a lot. Seriously – if you legitimately found something that helped cure cancer, prestigious journals would be tripping over themselves to have you publish in them. The fact that you can’t publish your research anywhere except in the occasional bottom-of-the-barrel shady journal means your research is terrible.

There was a final citation that stood out to me. It was the only citation that wasn’t research that Burzynski himself had done. Another key facet of science that makes it robust is that other scientists must be able to confirm your findings. And if they falsify your hypothesis, it’s back to the drawing board. So lets look at this one last citation:

11. Ogata, Y., Shirouzu, K., Matono, M., Ushìjima, M., Uchida, S., Tsuda, H. Randomized phase H study of hepatic arterial infusion with or without antíneoplastons as adjuvant therapy after hepatectomy for liver metastases from colorectal cancer. Ann Oncol 2010;21:víiî221 .

Again, this was a presentation made at a conference, specifically the 2010 European Society for Medical Oncology. Again, that means this research has not been peer-reviewed at all. In addition to the lack of non-Burzynski studies replicating his results, the National Cancer Institute also points out multiple studies (in legitimate journals) that are not able to replicate his results.

I would really like someone to take a look at the few papers Burzynski has published to see what the science looks like. One, I can’t access the couple of journal articles he actually does have because the journals are so crappy that my university doesn’t bother subscribing to them. But two, my area is population genetics and evolution, so I’m not really equipped to do an in-depth analysis of cancer research. But as a biologist I can safely remark on the quality of the journals his research was published in, and what that means.

So, Burzynski. Do you have any actual science to support your claims?

Update: I discuss further damning revelations about Burzynski’s research in this newer post.

For shame, Burzynski clinic

Why am I directing my ire at the Burzynski clinic? Any one of these reasons would be enough, but let’s go through the list, shall we?

1. Pseudoscience. The Burzynski clinic claims to be able to cure cancer with “antineoplaston therapy.” What’s that? Mainly a load of bunk (emphasis mine):

Some people promote antineoplaston therapy as a cancer treatment. But available scientific evidence does not support claims that antineoplaston therapy is effective in treating or preventing cancer. Antineoplaston therapy was developed by Dr. S. R. Burzynski in the 1970’s. He believes that antineoplastons are part of the body’s natural defence mechanisms against cancer and that people with cancer don’t have enough of them. At first, he took these compounds out of urine and blood. Now, it is possible to make them in the laboratory. There are several types of antineoplastons. They are known by the letter ‘A’ and a number such as A10, AS-25 and AS2-1.

Antineoplastons are taken either as a tablet or as an injection into the bloodstream.

There have been a number of phase 1 and 2 trials in different types of cancer. These early phase trials test what dose of treatment people should have, how safe the treatment is, and how well it works. Early trials only give the treatment to small numbers of people. Although Dr Burzynski’s own clinic have reported positive results for these trials, no other researchers have been able to show that this type of treatment helps to treat cancer. Other researchers have criticised the way the Burzynski Clinic trials have been carried out. Despite researching this type of treatment for over 35 years, no phase 3 trials have been carried out or reported. A randomised clinical trial is the only way to properly test whether any new drug or therapy works.

Are we clear? There’s no evidence that “antineoplaston therapy” cures cancer, despite decades of research. Moving on.

2. Unethical behavior. Despite this lack of evidence, the Burzynski clinic will happily give you their “treatment.” The newest example of this despicable behavior is with four-year old Billie Bainbridge, who has an inoperable brain tumor.

The Burzynski clinic is happy to “treat” her – for $200,000. Which was donated by random people and even some celebrities (including the bands Gorillaz and Radiohead), who had no idea that there’s no evidence that this treatment works. Exploiting sick children for your own profit is the lowest of low.

Quackometer puts it best on why this false hope is so terrible:

False hope takes away opportunities for families to be together and to prepare for the future, no matter how desperately sad that is. It may make the lives of those treated more unpleasant and scary. (Antineoplaston therapy is not without dangerous side-effects). It exploits the goodwill of others and enriches those that are either deluded, misguided or fraudulent. It may leave a tragedy-struck family in financial ruin afterwards. Giving false hope may be more about appeasing the guilt and helplessness of ourselves rather than an act of kindness to the sick.

3. Bullying. If you can’t back up your claims with scientific evidence, it seems like the next step is propaganda and bullying. Burzynski claims he’s some of “brave maverick doctor” who’s being persecuted by the scientific community. There’s a whole propaganda documentary supporting his clinic.

But now the clinic has turned to bullying bloggers who dare question the efficacy of his treatment. Marc Stephens, who represents the Burzynski clinic, has been sending deranged pseudo-legal rants to these bloggers, threatening to sue for libel. Andy Lewis of Quackometer had his family threatened:

“Be smart and considerate for your family and new child, and shut the article down..Immediately.”

If that wasn’t enough, Marc has aggressively gone after 17-year-old blogger Rhys Morgan, including a screen capture of a Google Maps satellite view of Rhys’s house in order to intimidate him. 

If Burzynski really is a visionary, his research should speak for itself. Bullying and silencing is not how science is done, despite how highly you think of your ideas. The Texas State Medical Board is holding a hearing next April to revoke his medical license – not because he’s a rebel – but because he’s unethically exploiting sick people with his pseudoscience.

If you want to learn even more about “antineoplaston therapy” and Burzynski’s history, Dr. David Gorski has an excellent and lengthy summary over at Science Based Medicine. And if you want to show these bullies that silencing tactics do not work, spread the word far and wide. Let’s teach them about this little thing called the “Streisand Effect.” 

Non-religious arguments for being pro-choice?

A friend of mine who’s in med school is looking for some good, credible resources on non-religious arguments for being pro-choice. Obviously the logical move was to ask a feminist atheist blogger, but I’ve failed him since I 1) Live in Blog Land, where good, credible resources are elusive creatures, and 2) Have a horrible memory and suck at recalling good things I have read.
But I know non-religious, humanist arguments for being pro-choice are out there. I could spend a couple hours writing a huge post myself on my own humanist arguments for being pro-choice. Oooooorrrrr I can be lazy since I know I have an intelligent well-read readership who likes to help me out (especially when I suck up to them by saying how intelligent and well-read they are). So what do you recommend? What are some good articles or books that address this subject? And I suppose blog posts are fine if they’re from a more reputable individual.

And if you just want to throw in your own godless 2 cents on the abortion issue, consider this an open thread. I’ll be hiding in the corner behind some bullet proof glass.

I like it to actually have a point

There’s been a new meme running around Facebook recently. If you haven’t heard about it, or if you’ve been confused by it, allow me to post the original message to explain what it is:

Remember the game last year about what colour bra you were wearing at the moment? The purpose was to increase awareness of October Breast Cancer Awareness month. It was a tremendous success and we had men wondering for days what was with the colors and it made it to the news. This year’s game has to do with your handbag/purse, where we put our handbag the moment we get home for example “I like it on the couch”, “I like it on the kitchen counter”, “I like it on the dresser” well u get the idea. Just put your answer as your status with nothing more than that and cut n paste this message and forward to all your FB female friends to their inbox. The bra game made it to the news. Let’s see how powerful we women really are!!! REMEMBER – DO NOT PUT YOUR ANSWER AS A REPLY TO THIS MESSAGE- PUT IT IN YOUR STATUS!!! PASS THIS TO EVERY WOMAN YOU KNOW

How is this raising awareness? Or more importantly, who the fuck isn’t aware of breast cancer by now? We don’t need to be raising awareness that it exists. We need to raise awareness about self examinations, mammograms, or places where we can donate money. That will actually save lives. How is posting a cryptic facebook status update that’s purposefully meant to confuse people saving the lives of people who suffer from breast cancer?

Because it isn’t meant to raise awareness or save lives. The point of this is to titillate. Now, I’m not going to pretend I’m above juvenile humor – I just made a post giggling at naughty sounding scientific words. But this is even bellow all of the “I Heart Boobies” t-shirts – even though those reduce survivors to their breasts, at least they actually raise money for research, treatment, and prevention.

But this is just sad. I think this redditor sums up how I feel quite nicely:

I’m a dude. I thought some of my facebook friends were just horny and proud of it, so when I read things like “I like it on the table / couch / car,” I thought, “Good for you! You’re owning your sexuality, even if it’s some awkward public declaration of it! Go do your thing!” To find out it’s about breast cancer ruins both the campaign and my friends’ false sexual declarations.

Our society needs to stop treating women’s sexuality like it’s only acceptable when used as a tool or in jest. It’s just as sad that women are perpetuating it. They’re effectively saying “This is funny because I would never actually talk openly about my sexual preferences, or even admit to being sexual, and I like confusing guys so they’ll give me attention by posting a bunch of comments to my status!” Cut it out, ladies.

I like my purse on my floor. And I like having sex wherever I goddamn want.

Now go here to actually do something worthwhile – one click has a sponsor fund a free mammogram.

Apparently even Humanists can be sex-negative

This excerpt was meant to advertise Jennifer Hancock’s new book, The Humanist Approach to Happiness: Practical Wisdom. What it actually accomplished was making me think it was all a load of bullshit that I most definitely am not going to waste my money on.

The Costs and Consequences of Sex

“Sex always has consequences. When Hitler’s mother spread her legs that night, she effectively canceled out the spreading of fifteen to twenty million other pairs of legs.”

– George Carlin

Everything has a cost. Before you act, you really need to consider whether you can handle the consequences. And this is doubly true when it comes to sex.

Okay, sure, with you so far!

Anyone who tells you that sex is no big deal is either lying or isn’t doing it right.

And the alarm bells start flashing. This sounds like it’s about to set us up for some awesome “Sex is only safe and pleasurable when in a monogamous relationship!” bullshit typically used by Christians. Let’s see!

Sex is a big deal and it has emotional, physical, and sometimes financial consequences. Before you have sex with someone, make sure you are prepared for those consequences. This is where being responsible comes into play.

Your Heart

First and foremost is your heart. If you are having sex for the wrong reasons, you will regret it afterward, and that kind of ruins the experience.

Okay, sure. If you’re having casual sex but what you want and expect is a long term monogamous relationship, probably not going to end so well. And vice versa – if you want something casual but you’re trapped in a long term monogamous relationship, you’re probably not going to be very happy. That’s what you’re about to say, right?

Sex is best when it is a loving expression of your feelings for another person. When you are sharing a part of yourself in a very intimate way with someone you love, it can be magical.

JK. Sex is only supposed to be with someone you love. Except that many studies have shown that casual sex is not emotionally damaging and can actually lead to stable relationships.

If, however, you are having sex to keep your partner with you, then when (not if) they leave you, you will be miserable. The question you need to ask yourself is, if the worst that could happen happens and this person never calls you again, how will you feel about what you have done?

Your Health

Having sex with the wrong individual can kill you. Sexual transmitted diseases (STDs) are real, and if you have sex, you are at risk of contracting one. You can mitigate that risk by choosing your sexual partners very carefully, making sure that you are only having sex in mutually exclusive relationships, making sure each partner is tested for STDs before engaging in sex, and using protection anyway. If you think all this would kill the moment, consider how bad it would be if it actually killed you instead.

Sex can obviously lead to pregnancy, even if you use precautions. And if you aren’t prepared for that possibility, you might want to hold off on having sex until and unless you are ready to handle an unintended pregnancy. Also, if you don’t think your partner can handle that consequence, don’t have sex with him or her.

Wow, can you say sex-negative? This is reminiscent of a deep South’s high school’s sex education. OMG NEVER HAVE SEX BECAUSE YOU’LL DIIIEEEEE! Or worse, GET PREGNANT!!!!11!!one!!!

Look, people. Yes, STDs are a problem. Yes you should always use protection, get tested for STDs, and sleep with people you have at least some level of trust with. But the way to deal with them is not through fear mongering and omitting practical information (ironic given the title of the book). This is exactly what abstinence only education programs do, and they’ve actually been shown to increase the rates of STDs in teens. Knowledge is power.

Stuff like this contributes to society’s stigma about STDs. You know, most STDs really aren’t that bad. Chlamydia, Gonorrhea, and Syphilis can be cured with antibiotics. 65-90% of people have Herpes 1 (“oral” Herpes, though it’s not limited to the mouth), and 15% of people have Herpes 2. Symptoms can be reduced to practically nothing with medication. And about 80% of sexually active Americans have HPV, though it usually clears without any symptoms showing.

Does anyone want an STD? No, just like no one wants bronchitis or any other disease. The stigma is blown so out of proportion compared to the actual harm, and fear mongering adds to that. But people shouldn’t feel like getting an STD is the end of the world. That can have more consequences than the actual disease (source: read any sex advice column).

Your Money

Finally, there are sometimes financial consequences. Sex with prostitutes isn’t the only sort of sex that costs money. Having a child, even if you give it away, costs money. Contracting an STD costs money. Affairs can be very expensive. People have lost their jobs because of sex. Do you want sex badly enough to lose your job, or get extorted by a spurned lover who is threatening you? If not, then it is best to keep your pants on and pass on that offer of free sex. Nothing is ever free.

…

The Humanist Approach to Sex

“In all sexual encounters, commitment to humane and humanistic values should be present.”

– The American Humanist Association, Sexual Bill of Rights and Responsibilities

Sex is a big deal. There are consequences to having sex and you should be prepared for those consequences before engaging in sex with anyone. The Humanist approach to sexuality is that it should be pleasurable, loving, and free of guilt.

Free of guilt? …Does anyone see the irony in that statement compared to the guilt-filled paragraphs that proceeded it?

But that doesn’t mean that anything goes. With the freedom to express your sexuality comes responsibility. From a Humanist perspective, sexual morality cannot be separated from general morality. Both must include compassion, ethics, and responsibility.

Whether any given sex act is morally acceptable from a Humanist perspective really depends on whether it helps the people involved become happy or causes suffering. Sexual pleasure must not come at the expense of someone else’s happiness.

To make sure sex is a source of both pleasure and happiness for you, take precautions to keep yourself and your partners safe. Don’t develop unrealistic expectations for yourself or your partners through the irresponsible use of pornog
raphy or other forms of sexually fantasy. Choose your partners wisely. And always approach sex as a responsible, educated, compassionate, and ethical person.

I do agree with her closing remarks, mainly because I do consider myself a Humanist. But that just makes the previous paragraphs even more disappointing. Precautions, responsibility, and avoiding harm shouldn’t be connected to guilt trips about monogamy and fear mongering about STDs. Not to mention she provides no actual evidence for what she’s saying. Seriously, sex-positivity FAIL.

I wish there was The Atheist’s Guide to Sex to counter this. Featuring Greta Christina, Dan Savage, Heidi Anderson, Jen McCreight…

Exposed scientific dishonesty illustrates why science is so great

That title may sound counter intuitive, but give me a chance to explain.

You may have heard about the bit of academic scandal that’s been happening at Harvard recently. Marc Hauser is a Professor in the Departments of Psychology, Organismic & Evolutionary Biology, and Biological Anthropology. He was the leading researcher on the evolution of morality and moral behavior in primates and humans and an author of a number of books, including Moral Minds and (in progress) Evilicious: Our Evolved Taste for Being Bad.

In a somewhat amusingly ironic twist, he was found guilty of scientific misconduct, including fabrication of data that will result in several papers being retracted.

This is a very serious situation, especially since Marc Hauser was such a big name in his field. His career is effectively over, and now reseachers in the field have to rethink everything they’ve learned from him (and cited from him). It’s even more serious for his students, whose futures are uncertain when their graduate advisor has such a black mark on his record. It’s upsetting to the field of science as a whole, which does rely on a certain level of trust for practical reasons. We peer review to the best of our abilities, but you still have to hope everyone else is being honest like you since it can take time to expose problems.

It’s also a little jarring to me personally. Not only will I have to reexamine what I read in one of his books that I greatly enjoyed, but I almost went to graduate school in one of the departments he teaches in. Academic scandals aren’t the best way to start your graduate career.

But we have to remember this is what makes science so great. Science is not dogmatic. It’s based on peer review and constant criticism. Scientists are still human and make errors, sometimes purposefully and sometimes not, so it’s important to have these checks in place. Hauser was a giant in his field, but even he was not immune to scrutiny. It was his own graduate students who brought these problems to our attention at great personal risk.

Some people are using this as a chance to pooh-pooh the whole field of evolutionary psychology. I’m sure it’s only a matter of time for creationists like Ken Ham to squeal with glee and twist the facts for their own “Never trust science!!!” agenda. But I really don’t think this is quite so tragic. Isn’t it good to know that we still expose bad science, even when we may have political reasons to not? Would we rather have evolutionary psychology trucking on without criticism, or get the fraudulent data out in the open? I’d be more concerned with the field if it was just being swept under the table. While it’s sad such dishonesty occured, I’m happy to know that we can still sniff it out, correct it, and punish those who perpetuate it.

Maybe I’m being overly optimistic (I know, unusual for me). But I think it’s good to use this as an example of why science is the best way of exploring the world around us: Because when our findings are wrong, we’ll admit it.

No genetic testing project for UC Berkeley freshmen

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.