President Obama’s Precision Medicine Initiative (PMI) has set forth on its ambitious journey, mapping the DNA of one million volunteers. The potential upside is massive, unlocking key genetic information that could finally turn the battle against many health disorders with more effective, targeted treatments for diseases like cancer and diabetes. The initiative could last more than a decade and cost over a billion dollars. Participants will share their genetic data, biological samples, lifestyle and diet information. Also under consideration are mobile health devices and wearables that will collect data about the participant’s health and environmental conditions between doctors’ visits.
The power of the initiative will ultimately be the creation of a standardized, central and shared repository of the one million volunteers. But exactly what data is collected, and how it will be transmitted and stored in the U.S.’s incompatible medical health systems has not yet been determined.
A “dream team” has been appointed by the President, including Andrew Conrad, Google’s “medicine man” and head of Google X’s Life Sciences team. Sue Siegel, CEO of GE Ventures and Healthymagination, will also join the team. Tony Coles, also on the team, who is the CEO of Yumanity Therapeutics insists, “We count on the government, and academia, to really help us understand the basic biology of disease – they’re far better suited to unlock the mysteries of the human body than industry. Once they help us understand the basic biology of disease, we can very specifically target our resources, and use those insights to develop new therapies,” he said.
The private industry has collected similar patient data for years. But they have not been willing to share the data outside exclusive partnerships — some say selfishly. The data represents intellectual property used to create new revenue generating products; while the industry will point to the protection of patient’s data. Google’s 23andMe has already accumulated over 850,000 genotyped customers and just last month launched into drug research and discovery, using these same samples where customers have granted their permission; over 80% have done so.
Juggernauts such as Genentech, Illumina and Celera, have also been documenting citizen DNA long before the PMI. These companies already have the intellectual property, talent and expertise in precision medicine research. In fact, Illumina has been contracted to provide all of the sequencing, for the U.K.’s 100,000 Genomes Project.
The PMI is an extremely worthy goal; one that someday I predict, will be viewed as the science and medical world’s equivalent to NASA’s Apollo program. But — only when it makes it off the launch pad. Science history repeatedly has shown government should not go it alone. The Human Genome Project, Space X, the World Wide Web and most similarly the U.K.’s 100,000 Genomes Project — all propelled forward only when the public and private sectors have partnered. Ultimately, it will take both to deliver a huge payload of health benefits to U.S. citizens.