Introducing a Do-It-Yourself Revolution in Disease Research


There’s a high likelihood that a disease of some sort affects you or one of your relatives – every family seems to have ripples in its gene pool that define and shape its health dynamics.Your family might have a propensity for rheumatoid arthritis or a particular type of cancer. Whatever it is, there can be an instant family bond created by that disease – along with a sense of fate.That feeling moves some families to action. The Heywood brothers started PatientsLikeMe when one of them, Stephen, was diagnosed with Lou Gehrig’s disease in 1998. Nancy Brinker created a huge force in breast cancer research through the Susan G. Komen Foundation, named for her sister who died of that disease. Michael J. Fox, a father of four, started his remarkable foundation after he was diagnosed with Parkinson’s disease at the age of 30.But not everyone can garner the resources to create their own company or foundation; it’s hard to know where to turn in trying to make a difference. This summer, 23andMe is launching the Research Revolution to empower more people to jumpstart genetic research into the diseases that affect them and the people they love.This new research model makes it possible for large groups of people to assemble themselves into large-scale genetic studies without having to raise millions of dollars in funding, and then wait years for things to get rolling. Participants also get access to their own genetic information through the 23andMe Personal Genome Service Research Edition, which offers a snapshot of what their data says about more than 100 diseases and traits. We believe that if you volunteer for research, you should be able to see what you’ve contributed to the effort.The Research Revolution is going to start with the 10 diseases listed at the bottom of this post. There are several ways you can participate:* Visit the Research Revolution page and vote for the disease you would most like 23andMe to study. * If you’re already a 23andMe customer, log into your account and complete any of the 23andWe surveys you haven’t taken yet. * Spread the word – especially to people who are patients or survivors of the 10 diseases we’re featuring.There’s strength in numbers. The more people who enroll in the Research Revolution, the more likely it is to make new discoveries about the causes and about the treatments of disease.Long live the revolution!The 10 Research Revolution diseases are:ALS Celiac Disease Epilepsy Lymphoma and Leukemia Migraines Multiple Sclerosis Psoriasis Rheumatoid Arthritis Severe Food Allergies Testicular Cancer
  • I hope that there will be more interest in Epilepsy.

    There are so many misconceptions about this “hidden disabilty”. I trust that your work will contribute to better understanding of it.

  • This is a terrific concept. I can mobilize dozens to hundreds of patients with certain uncommon but not especially rare cancers, such as never-smokers with lung cancer (20-25,000 people in the US each year), and other understudied but very interesting subtypes highly relevant to clinical research. I need to actually speak with someone on the 23andMe research side about getting this research done. I’m confident that many people/consumers would want to know if they are at higher risk for lung cancer, for instance, and this would be exceptionally relevant to the cancer research community. I’d be very eager to talk with the right person if they can contact me at — thanks.

  • I personally agree with John (comment above), and would love to see some new, first hand depictions of the epilepsy ‘disability’. I have temporal lobe epilepsy, and even properly finding diagnosis was a six year long struggle. With so little in what the medical community offers as ‘absolute truth’ about the ‘paradoxical condition’ that weaves through neurology and psychiatry, an interactive research and reporting community would offer a great amount of insight into what can be a terribly confused understanding of epilepsy.

    Thanks! Great Site!

  • Diane G

    I echo the previous two emails about more research needed in Epilepsy. It affects my family and countless others… but not nearly enough attention has been paid to its causes or cure.

    Some of the more recent studies have the genetic contributive factors back up to 40-percent of all epilepsies (some studies previously had it at less than 10% of the epilepsy affected 1% of the general population):
    “The Causes of Epilepsy: Common and Uncommon Causes in Adults and Children”, edited by Simon D. Shorvon, Frederick Andermann, Renzo Guerrini (2011), page 43. Prejudicial studies that have undoubtably made major Bayesian errors have the overall “genetic causes” at both extremes of 0% and 100%. One of the most common examples of this type of error in Bayesian Probabilities/Statistics is the (in)famous “Monty Hall Paradox”.

    “Recent estimates of the “heritability” of epilepsy,…, range from 8% to 88%.” Ibid. p. 44: