Just spit into this vial and reveal your family tree. This is the basic premise behind one of the most successful Genomics companies in the world. 23andMe has always excelled at distilling complex scientific processes into an approachable Call To Action.
The global scientific community rejoiced in support of 23andMe's market success as a clear victory for scientific literacy and perhaps even the dawn of a new era in precision medicine. An estimated 5 million DNA samples has been collected to date from everyday people excited to explore their Neanderthal ancestry and share their chromosomes in common with family and friends.
But the innovation did not stop at the marketing department. In 2012, 23andme had the foresight to architect an application programming interface (API) which provided developers and university researches with unprecedented access to raw genomic data. An invaluable contribution to the discovery of genetic risk markers for cancer and rare disease. Hundreds of new biotech companies and research projects formed to take advantage of this incredible data resource. Some of the teams even developed powerful third-party DNApps to help millions of people better understand their bodies and gain control over their health.
On August 23rd, at 10:30am an undisclosed number of software developers, geneticists and medical research teams around the world received a morbid email crafted in shame and supported by awkward motivations.
The API that had inspired an entire cohort of enterprising scientists and innovators to build genomics services was suddenly closing down. A decades old promise of delivering an affordable genetic opportunity for a disease free life was tragically undermined by the same company that once demonstrated true innovation in science, public policy, data openness and even popular culture.
By shutting down the API, 23andMe sent a clear signal to genomics and pharma companies around the world. An action that will have terrible consequence for the health of our society and the entire life science sector. An economic threat born out of a scientific violation which quietly celebrates greed and revels in outrageous arrogance.
One the most endearing qualities of the life science sector is its support for the innovative companies at the bleeding edge of scientific discovery. We all win when fellow scientists and technologists bring successful drug therapies to market; however, we also share the responsibility of protecting this industry from unnecessary controversy. The general public has a fragile understanding of modern medicine and clinical application, losing their trust to a selfish exchange of social responsibility in return for revenue must not be tolerated under any circumstances! To avoid public scrutiny and a regulatory backlash, we must engage in it ourselves. A sort of peer review process for our own values and decisions. Closing down the developer API is an affront to innovation and should be properly flagged as aberrant behavior by our collective immune system.
The 23andMe API debacle brings up a bigger question concerning data ownership, privacy and commodification. Can a company make decisions about your DNA data without consulting you? Should you be compensated for your scientific contribution? Should all citizens be incentivized | rewarded to contribute DNA to a master database? And finally, what prohibitively expensive penalties should we charge insurance companies for raising insurance premiums based on DNA analysis?
This is not only a time of new science, but also new business models. People should be rewarded for great work, hoarding data is not great work. It's a way to limit really finite resources from people that could be doing something extraordinary with it. To prevent competition from creativity is a cheap approach, plus you only make them more creative! Data is a utility that allows Healthcare and the Life Sciences to create products. These products generate significantly wealth for honest and value driven companies, executives, scientists, and all the extraordinary people that comprise an ecosystem. Culture Tech will dominate the business landscape, and a computational renaissance will usher in a paradigm shift in diseases detection, treatment and prevention. I urge you to adopt an open-DNA data sharing policy as a new model for eliminating disease around the globe.
Or maybe 23andMe can just leave the API open and we can all forget about this!