National ‘All of Us’ campaign aims to enlist a million genomes for precision medicine
BY ALAN BOYLE
Eric Dishman is a living, breathing advertisement for the ambitious experiment he’s in charge of, the National Institutes of Health’s “All of Us” drive to collect and analyze the genomes of a million Americans.
If it weren’t for the fact that he had his genome sequenced seven years ago, he probably would not be living and breathing.
Back then, he was struggling with a rare form of kidney cancer that had put him through decades’ worth of chemotherapy, radiation and misery. And the end was near.
“I was probably going to die, and I was literally on my last business trip to both Boston and San Diego, where a lot of the early genomics work was being done,” Dishman, a former Intel executive, recalled today during a sit-down with journalists at the University of Washington.
During that last business trip, one of his contacts suggested sequencing his genome as well as the genome for his tumor. Dishman figured it couldn’t hurt.
It turned out that the genetic mechanism behind his tumor’s growth was similar to the mechanism behind pancreatic cancer. After taking a drug that’s typically prescribed to treat pancreatic cancer, Dishman was cancer-free and in good shape for a kidney transplant.
“I just turned 50, and I am healthier now at 50 than when I was at 19, thanks to whole-genome sequencing,” Dishman said.
That’s the sort of outcome that Dishman hopes will become more common once the “All of Us” campaign hits its stride. Dishman, who directs the research program, visited UW today to speak at an all-day seminar on personalized medicine.
“All of Us” could mark a new stage in the field, which has been pioneered by Seattle biomedical researchers such as Lee Hood, co-founder of the Institute for Systems Biology and the Arivale personal-wellness startup; and UW geneticist Jay Shendure, director of the Brotman Baty Institute for Precision Medicine.
The goal of the program is to recruit a million Americans from all walks of life to have their entire genetic code deciphered, and then to trace the connections between their genes and their health over the course of decades.
Volunteers are being recruited through the “All of Us” website and smartphone app (available for Apple iOS and Android), through outreach events (including one that was conducted in Pasco, Wash., in May), and through referrals from physicians. Participants are typically asked to provide blood and urine samples, undergo a health exam and grant access to medical data.
More than 133,000 volunteers have registered for the project since it was officially launched in May, and 75,000 have completed all elements of the core research protocol. Dishman said the selection process emphasizes demographic diversity, with an eye toward highlighting populations that are typically underrepresented in biomedical research.
“All of Us” is aiming to hit the million-genome goal by 2023.
“This will be one of the most ambitious, audacious whole-genome sequencing efforts in human history,” Dishman said. “It is game-changing to put in an order for one million whole-genome sequences, given that the world has just now produced a million whole-genome sequences historically. Putting out an order to double that is a pretty major deal.”
UW’s Northwest Genomics Center is one of three centers charged with analyzing DNA samples, along with the Broad Institute in Massachusetts and Baylor College of Medicine in Texas. Dishman said the project’s privacy protocols are designed to ensure that personal details are held confidential. The genetic data will be anonymized for studies aimed at finding linkages between health factors and genetic makeup.
“These are some of the biggest of the big-data challenges,” Dishman said.
The project is piloting procedures to share information about traits, ancestry and potential genetic links to health conditions with participants — and Dishman acknowledged that access to genetic counseling will have to be a big part of the process. “You can’t just dump this on people,” he said.
Perhaps the most useful information will focus on a field called pharmacogenomics. The genetic analysis could well show which drugs would be most effective to treat a particular patient’s medical condition, and which drugs should be avoided.
That’s how it worked for Dishman in his own life, and how Dishman hopes it’ll eventually work for everyone. Personalized, precision medicine may be expensive in the short run, but he’s betting that it’ll be a money-saver as well as a lifesaver in decades to come.
“I’m the Six Million Dollar Man,” Dishman joked. “We haven’t adjusted it for today’s dollars, but an economist helped me put it together and said, ‘Hey, [you had] about $6.2 million in care.’ Ninety percent or more of that was destined never to have worked, and there was an enormous amount of suffering for me. … Think about the people who didn’t get care in this country because we spent all this money on this random, well-intentioned guesswork. This is what precision medicine is about.”