A new national effort aims to create a massive collection of medical data, which the federal government will use to develop new treatments and expand their understanding of diseases such as cancer.
The project, called All of Us, will only work if thousands of Americans agree to share a profile of their health.
“The number one motive for everybody is, still, I want to give back to future research, I don't want my kids, and I don't want my kids’ kids to deal with the same health problems that either I have or my family (has),” said Eric Dishman, director of All of Us, a National Institutes of Health program.
University of Washington and the Seattle-based Brotman Baty Institute for Precision Medicine are partners in the research.
So what's in it for you? All of Us will share with you and your doctor new info and insights about your health, and yet-to-be uncovered breakthroughs, which could help you understand your risks.
The goal is to collect info from one million Americans. So far, 75,000 people have already made it through the first stage of data collection, Dishman said, and a majority of those participants are from medically underrepresented groups.
“We have got to get racial and ethnic diversity, socioeconomic diversity, geographic diversity because we just don't have it in the science, and thus we're not developing cures for those people,” Dishman said.
This work is only possible today because of advances in mapping the human genome, the unique picture of someone’s DNA.
Dishman, who was diagnosed with a rare form of kidney cancer at age 19, was once close to death until he had his genome mapped, providing his doctor with much clearer instructions on how to fight the disease.
“I'm healthier now at 50 than I was at 19, thanks to whole genome sequencing,” he said.
All federal research is protected by a law that guarantees confidentiality, Dishman said. Anybody who touches that info has to protect the identity and privacy of the patient. They cannot even share the information with law enforcement.
All of Us is free to participants and involves filling out questionnaires online and sharing health records. Some participants may be asked to go to a clinic so a doctor or nurse can gather measurements and blood pressure readings.