Each one of us carries in our cells the vital genetic data, compliments of our parents, that code for many of our traits and attributes.  Whether it’s our eye color, height or the ability to consume dairy products, the variations in our genes contribute to making us ‘one of a kind’.  Unfortunately, these variations can also lead to the onset of disorders that aren’t so unique.

Technology now allows scientists to tap into our DNA as they attempt to unlock the underlying genetic causes of diseases that afflict so many of us.  These studies, often called Genome-Wide Association Studies (GWAS) because of their comprehensive design, are producing some very compelling results. Under the present research model, individuals who are asked to consent to participating in these studies typically donate a blood or saliva sample and provide access to information about their particular disease (or drug response, in the case of pharmacogenetic studies) through their health records or through diagnostic interviews.  Scientists then look for genetic correlations that can help direct the development of diagnostics and therapeutics.

This model is fairly steeped in tradition and protocol.  Once your sample and information are collected, researchers go out of their way to break the link back to you, with the mindset that it’s a necessary measure to protect your privacy — and, frankly, minimize their liability to deliver and explain the data. The genetic information derived from your DNA is often “de-identified” or “anonymized” so that it can’t be traced back to you.  As a “human subject” in a study such as this, you are not offered access to this very personal data.  Yet it could be very important for you to know. Now that we have more knowledge about how our genes impact our lives, thanks to these very studies, shouldn’t you be given access to the data if you want it? Even if there’s little you can do to alter the course of your genetic predispositions — which are often not definitive — we’re seeing overwhelming evidence that a lot of people would like this information.

At 23andMe, we believe it’s time for a research revolution, where the people involved — let’s no longer call them human subjects — can play a more active role and contribute more directly to studies of most interest to them and their families.  And if any individual would like access to his or her data, he or she should be granted that request.

In this spirit, 23andMe is proud to support www.HealthDataRights.org and the Declaration of Health Data Rights.  We believe genetic data are an integral part of your health information, and you should have access if you so choose.

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For years I believed that every Mexican restaurant my family took me to had some kind of problem with their dishwashing machine. Why else would the food always taste like soap? No one around me seemed to notice, so I just assumed that everyone else liked the taste of dirty dishwater in their food.

Fast-forward several years to college: I’m at dinner with some friends, and a girl named Alice asks the waiter “Could you not put cilantro on that? It tastes like soap to me.”

I was so excited. Not only had I found someone who had experienced the soapy food phenomenon, I now had an answer for what was causing it: Cilantro.

It turns out that Alice and I aren’t so special. There are lots of people who hate cilantro. Some, like us, think it tastes like soap. Others think it tastes like doll hair, stinkbugs, or burnt rubber. (See ihatecilantro.com for a long and colorful list of descriptors, as well as stories from fellow cilantro-haters).

There’s some evidence that hating cilantro (or as I like to think of it, realizing how gross cilantro truly is) is genetic. One study found that identical twins (who share 100% of their genes) are more likely to have the same opinion of cilantro compared to fraternal twins.

Could there be a SNP that explains why I hate cilantro but my husband loves it, just as there are SNPs behind my wet earwax and ability to drink milk with no lactose intolerance problems? This is the kind of question we hope 23andWe can answer.

By taking 23andWe surveys, customers can help us advance scientific research. We’ve already asked about which hand and eye they use more, whether they’ve ever had any cavities, and of course, whether they can smell anything in their pee after they eat asparagus. In the coming months, there’ll be plenty more surveys. And as we move forward, we’ll also be asking about more serious traits related to health and disease risk.

23andWe is consumer-enabled research (CER™). So we want to ask you, our customers and potential customers: What do you want to know about? Do you have a particular preference that you suspect is determined by your genes? Have you always wondered if some distinctive family characteristic is due to nature or nurture? Leave us a comment!

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Brian spends his days deep within the heart of the 23andMe web infrastructure. He is a software engineer with long experience in the biomedical field, having previously supported pharmacogenomics and brain imaging endeavors. In addition to being ready and willing to automate himself out of a job, Brian is obsessed with producing beautifully designed, well factored code. An engineer friend once referred to him as a member of the “Order of the Golden Ziggurat” (a shadowy society of engineers fanatically devoted to code beauty). Brian also sometimes works on user-facing features, and actually enjoys writing javascript, though his command of the dark art of CSS cannot match that of the UI wizards he works with.

Brian on the 23andMe service:

“Understanding that knowledge is power, I’m excited to know as much as possible about myself. 23andMe empowers its customers (including me!) by providing them with a wealth of new personal information that would have been completely inaccessible just one year ago.”

“I am also very excited about 23andMe’s prospects for generating novel research results from genome-wide association studies. The expense of collecting enough data to derive relevant findings from an association study is simply prohibitive for most traditional research groups. Overcoming that expense by the economy of scale puts 23andMe in a unique position to pioneer a more productive and fundamentally new paradigm for genetic research.”

Brian on being a 23andMe employee:

“The group I work with here is like an engineering SWAT team. I’ve learned much more from them in the past nine months than I would have working independently or with a company that invested less time finding and selecting the best. The emphasis placed on security is also unparalleled. Knowing that the engineers responsible for our core security infrastructure have come straight from top positions in the online finance industry gives me great confidence in the security of my genetic data. Of course we have plenty of fun here too – Rock Band, Segway polo, movie nights, and meals provided!”

Think you have what it takes to join Brian in engineering? Check out our jobs page!

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You may have already read about 23andWe and the ”Power of We” in earlier blog posts. As the research arm of 23andMe, we’re hoping 23andWe can produce valuable discoveries about the genetic roots of diseases, conditions and traits that are little-studied due to funding limitations, logistical obstacles or simple lack of interest among scientists. 23andMe’s payoff could prove enormous by offering insights that may eventually lead to risk predictions, diagnostics, treatments or even cures for diseases.

At 23andMe, we are all about grand ideas with big potential, and we are committed to realizing our vision, but how do you even start such a big project? You begin at the beginning, of course.

When we first started thinking about the traits we wanted to study in 23andWe, we faced a big problem. Out of all the possible traits out there, which ones should we study first? It’s both an overwhelming and wonderful problem to have, and one, I think, that is pretty unique in the scientific community.

Most academic human genetics labs don’t have the luxury of splitting their research resources amongst many different problems. Subject recruitment, genotyping, and analysis are so difficult and expensive for even one trait that it’s usually feasible for only the largest and most well-funded centers to do this type of work. Limited funding usually also means that only the traits and diseases that are considered really serious get studied.

In 23andWe, we saw a unique opportunity to tackle interesting and important questions about biology and disease that have so far been largely left unanswered.

Focusing on what has traditionally been understudied helped narrow down our field of research questions a little bit, but not that much. Frankly, not that many traits and diseases have been studied very well. So we had to apply a few more filters.

We wanted to pick topics that
• Are relatively simple, because we have to walk before we can run.
• Are easy to capture accurately over the Internet (which for now will involve online surveys).
• Will apply to a wide swath of the population.
• Already have some evidence in the literature for having a genetic basis

I can’t tell you how many PubMed (a biomedical literature search engine sponsored by the National Institutes of Health) searches we’ve done, nor how many 40-, 60-, and 80-year old papers we had to dig up to find some of the information we needed.

It’s been a fascinating project to work on. Did you know that people have been studying the inheritance of tongue curling for close to 70 years ? Turns out it’s not the simple Mendelian trait your high school biology teacher told you it was. Instead, tongue curling ability is probably determined by a mix of genetic and environmental factors.

It’s not all about tongue curling though. We’ve also been delving into the literature on many more serious health issues that affect large segments of the population but have not yet received as much attention as they deserve. These topics range from dyslexia, to endometriosis, to migraine. We plan to collaborate with experts in the scientific and medical communities to push forward the limits of our knowledge on these important topics, with the long-term goal of helping to improve the quality of people’s lives.

In the coming months you’ll start seeing the fruits of our labor as we roll out our first 23andWe projects. Of course, this is just the beginning. We’re going to spend countless more hours scanning our PubMed search results and fighting with the scientific journals’ user-unfriendly websites. And our thought processes, methods, and goals will continue to evolve as we gain experience and accumulate data. But it’s all worth it, because the rewards are potentially great.

Stay posted…

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