The Power of We

We started 23andMe to enable individuals to get access to their genetic information. Our DNA is a fascinating aspect of who we are, and we feel strongly that anyone who wants their genetic data should be able to get access to it. But we also started 23andMe to accomplish something that could impact all of us in a much greater way-to change the current research paradigm.

The power of 23andMe is in the We. All over the world we can see examples of individuals coming together to change society. Healthcare is a shining example of it: The Susan G. Komen Foundation, Livestrong and Team in Training are just a few examples of individuals who have come together to create change.

Our goal at 23andMe is to enable individuals to form communities around shared interests and to empower those communities to be actively involved with research. We call it Consumer Enabled Research. We don't just want communities to have a voice, we want to provide a platform for them to collectively aggregate their genetic information. One of the significant bottlenecks in research is the lack of data. Researchers and physicians rarely have enough of it to really understand a disease or how to treat it. Our goal is to change that.

We believe personalized medicine could and should become mainstream in the near term. Rather than using often out-dated diagnostic criteria, we believe doctors will be able to utilize new genetics-based methods to more accurately pinpoint a problem. Before taking a drug to treat these problems, patients should know if they are at risk of having an adverse reaction, or whether they should have a lower or higher dose. Medicines are definitely not one-size-fits-all, but unfortunately that's predominantly how they're prescribed.

We also believe that individuals should have more involvement in the traits that are studied. Did you know it is hypothesized that red heads require less anesthesia? If you are a red head, you'd probably like to know if that is true or not! At 23andMe, individuals will have the ability to form communities, input information, and help the research world take on new questions.

Researchers are currently limited in the projects they can take on because it's expensive to recruit individuals, and funding is limited. We believe 23andMe could change this. Individuals have the ability to help lower research costs by making their data available for the research community and by having multiple groups research the data rather than just one. We believe the democratization of data and the increase in competition could help accelerate the pace and diversity of research.

We're at the beginning of a revolution that combines genetics and the Internet. Wikipedia, YouTube and MySpace have all changed the world by empowering individuals to share information. We believe this same phenomenon can revolutionize healthcare.

Originally posted on The Spittoon, at 23andme.com

Comments

[mbaty]

I want to look at all the "junk" DNA I have--just put it in a pile like a heap of trash on a spreadsheet I can see. Also, where is the community researching actual medical cures? Haven't we had enough of this treatment-based pharma system? It would save us SO much money if we just cured these diseases. And I know we can. Where is that group of altruistic people who just want to, as the king of pop put it, 'heal the world?'

[cylindar]

Sounds good but I think there are limits. For instance I have a small company that does research and publishes the results for subscribers. Our fees are extremely reasonable. No one makes big bucks here. However if we gave this info away for free, we would not be able to afford further research. For those who have the time and have day jobs and are willing to contribute, this is a good idea. For folks like us, well??? We like the idea but we have mouths to feed and bills to pay. Wickipedia is nice and so is you tube but thats kids stuff. When you get into serious enterprise the doodle changes.

[pnd]

Question for Anne and Linda: How feasible is it for the US to establish a comprehensive DNA databank that allows people to verify and research familial, genetic links to one another? What are some of the benefits and repercussions you would anticipate from such a program?
What if it were done globally?
Thanks in anticipation for your response. BTW, really liked your Wired article,too.

[verhaftik]

I concur with the other posters. As it stands, I see this attempt at genetic medicine as a massive sham. It is an attempt to create demand for a product under the guise of "personalized" healthcare - a notion some salesperson thought would translate well to the egocentric American public in the form of $ billions into pharmaceuticals pockets. Trouble is, who is to say after all of those fabulous the genetic tests and subsequent individualized treatments that we are getting anything different than the next person? Please. The public is savvy 23andme. Why don't pharmaceutical companies try researching how to prevent cancer than trying $5 trillion dollars worth of ways to treat it? Nevermind. That an$wer is $$self-evident$$.

[Qohelet]

Not to mention the rife possibility of using genetic information - or the topic of personalized genetic information - to prey on the fears of the populace, and to twist it for evil ends.

Not only this, but what happens when the state of our knowledge of the human genome inevitably changes? Again, we do not have a complete understanding of all of the repercussions of our DNA make-up, the intricate and complex details of human gene expression. When we learn that what we thought we once knew, we did not, how will that effect our medical practice, especially if we have made determinative predictions based on the prior state of knowledge?

Much more would have to be said about the accuracy of reporting profiles, of keeping information confidential, seriously education the public on the basics (and not-so-basics) of genetics, before I my fears of this development are assuaged.
(part2)

[Qohelet]

Thanks for your comment, John. I agree with you 100%. While I am not a molecular biologist by profession, I have spent many years in a laboratory. Four laboratories, to be exact. Doing gene therapy research.

I, like you, question to what degree a SCIENTIST, let alone the average person, could in any reliable way make significant use of their DNA profiles. How many people understand what an allele is? What a base-pair is? How mutations develop? Why one trait is inherited from a parent but not another? How gene expression and regulation works? Not only that, but there are not always direct and predictable medical implications for a specific DNA sequence. While we have mapped the human genome, we definitely do not yet have a full understanding of it. (And our understanding of it will likely always remain incomplete to some extent). All of this has much to bear on the supposed predictability and of a DNA profile, and the answers we might be able to get from it.

I have looked at the 23andMe website, and there is some interesting information presented there. This company does not worry me so much as the possibility of gross misuse of this information, especially since environmental factors matter just as much - if not more, in a country such as ours, with its ubiquitous and increasingly novel man-made chemicals, antigens, and food additives that we have not yet begun to understand the full significance of - as genetic factors. An individual's genotype is not determinative, not independent of all other factors.

Genes by themselves do not tell the whole story. They require a context. And my fear is that as this concept of personalized/genetic medicine gets more popular, context will left largely out of the discussion. If that happens, there will be more "one-size fits all" prescriptions and proscriptions, which is what the authors of this post say they are trying to get away from.

(part 1)

[John]

I'm a molecular geneticist/cell biologist. As a political progressive I find the idea of empowering individuals with control over their own genetic information to be laudable. However it isn't clear to me how someone without a genetics and/or molecular biology background could make use of such information. Those of us who have been working on molecular cloning, gene knockouts, transgenic cells and animals, etc. would not be able to make many medical decisions based on the knowledge of our own DNA sequence or other genetic information. How would someone without a science background use such information? For example if one were motivated, and had the money to do it, they could probably have their genome, or substantial parts of it, sequenced or fine mapped for the occurrence of the better understood mutations in specific genes. There are also technologies for acquiring gene expression profiles (a sort of fingerprint) for tissues or cell types in the body. Simply having this information is akin to having the electronic specifications to your computer. If you don't know what this information means, you can't easily make use of it. The biggest problem I foresee, given the free-market fundamentalist, anything goes, environment that our pharmaceutical/drug companies operate under in the Bush era, is the potential for a lot of predation upon the an uninformed public. Instead of snake oil salesmen, we'll have all manner of unscrupulous hucksters claiming to be able to read your DNA sequence to divine your future health, guide your lifestyle and drug choices, etc. All for a fee of course.