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The National Institutes of Health are seeking one million volunteers to participate in a health study considered the largest research project in the history of humanity.
You may have agreed to donate your organs when you obtained your driver's license. Maybe you even wanted your body to science. But would you give your genome to the federal government?
Officials at the National Institutes of Health hope that a million people will say yes.
NIH has asked volunteers to participate in a project to sequence the genetic material of a million people living in the United States, possibly making it the largest research project in the history of humanity, said the project director, Eric Dishman. Dishman was at the University of Washington on Friday to discuss the project, which the NIH calls "All of Us." The project will include participants' electronic health records, as well as behavioral and environmental data.
Seattle will play an important role: about one-third of the samples will be sequenced at the University of Washington. The North West Genomics Center, which received a $ 7 million federal grant to begin work, is one of three such centers in the country.
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The project aims to improve "precision medicine" by using tailor-made treatments and medications to more accurately treat people based on their genetic make-up. This may indicate future remedies, inform people if they are at increased risk of contracting certain diseases or conditions and tell them if there are certain medications to avoid.
And it benefits from rapidly improving technologies, including automatic genetic sequencers, robots, and powerful computers that can process the genetic material, or genome, of an individual in days, rather than months or years.
Dishman himself says he is alive today thanks to precision medicine. At the age of 19, he was diagnosed with a rare form of kidney cancer – and he was told that he had nine months to live.
He has undergone cancer treatments from time to time for 23 years to fight the disease. Seven years ago, when his kidneys were failing, a researcher proposed sequencing his genome and tumor to determine if the genetic material could provide evidence of treatment. The sequence told doctors an experimental drug used to treat pancreatic cancer – even if Dishman did not have it.
He is now 50 years old and says he is healthier than he was at 19 years old. Precision medicine, he says, saved his life.
The project will undoubtedly raise privacy concerns as so many people commit to sharing their health data with the federal government, no matter how many promises the NIH makes, Dishman said. He said researchers would adhere to a strict code of ethics – for example, they were forbidden to share this information with law enforcement. This is not the case for genetic samples submitted to online genealogy services, such as the evidence that led to an arrest in connection with the serial Golden State assassination earlier this year.
"All" started in May and currently has 133,000 participants, about half of whom are from racial and ethnic minorities, said Dishman, which is significant because many clinical trials and other health studies have been devoted to to white men. NIH also targets geographic diversity and, as part of the study, will analyze participant exposures to environmental factors. This could indicate which health problems are more likely to occur for a month. farmer growing wheat on the Palouse or office worker in Seattle.
"That's the way all the medical research should be done in the future," said Debbie Nickerson, director of the Northwestern Genome Center.
This is similar to the famous Framingham Heart Study, which has tracked thousands of participants in a Massachusetts city for decades to discover the common factors leading to heart disease. But this study will follow people across the country and will examine all diseases.
The information will be collected and stored in a database open to everyone, but only researchers will be allowed to view each participant's data, said Dishman.
Dishman, who is 50 years old and lives in Portland, has already been interned at Paul Allen, co-founder of Microsoft, in his Silicon Valley think tank. When Allen heard that Dishman had accumulated hundreds of thousands of dollars in medical bills because he had no health insurance, Allen immediately offered to pay them. Dishman refused. Allen then promised, "I'll make sure you're never uninsured."
The program is open to adults aged 18 and over and includes the preparation of a complete history of medical history and a blood test. Participants can receive as much or as little information about their health as they wish. For more information or to register, go to https://allofus.nih.gov/
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