The National Institutes of Health are seeking a million volunteers to participate in a health study considered the largest research project in human history.
You may have agreed to donate your organs when you received your driver's license. Maybe you even wanted your body of science. But would you give the federal government your genome?
The leaders of the National Institutes of Health hope that one million people say "yes".
The NIH is asking for volunteers in a sequencing project for the genetic material of one million people living in the US, making it perhaps the largest research project in human history, said 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 includes electronic patient records of participants as well as behavioral and environmental data.
Seattle will play a big role: about one third of the samples will be sequenced at the University of Washington Northwest Genomics Center, which has been awarded a federal grant of $ 7 million to start work – one of only three such centers to carry out this work in the country.
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The project aims to enhance "precision medicine" by using tailor-made treatments and medicines to more accurately treat people based on their genetic makeup. It can indicate future healings, tell people if they are at increased risk for certain diseases or conditions, and tell them if there are certain medicines they should avoid.
They are backed by rapidly improving technologies, including automatic genetic sequencers, robots, and powerful computers that can process a person's genetic material or genome in days-not months or years.
Dishman himself says he lives today because of precision medicine. At age 19, he was diagnosed with a rare form of kidney cancer – and he said he had nine months to live.
He underwent cancer treatment for 23 years to keep the disease at bay. Seven years ago, when his kidneys failed, a researcher offered to sequence his genome and tumor to see if the genetic material would provide evidence of treatment. The sequence referred physicians to an experimental drug for the treatment of pancreatic cancer, although Dishman did not.
He is now 50 years old and says he is healthier than when he was 19 years old. Precision medicine saved his life.
The project will undoubtedly raise privacy issues as so many people commit to sharing their health data with the federal government, regardless of how many pledges the NIH believes to be safe, Dishman acknowledged. He said that researchers adhere to a strict code of ethics – for example, they are forbidden to share information with law enforcement agencies. This is not the case with genetic samples submitted to genealogical online services, such as the evidence that led to arrest in the serial killings of the Golden State earlier this year.
"All of Us" started in May and has 133,000 participants so far, of which about half are racial and ethnic minorities, Dishman said. The NIH also targets geographic diversity and analyzes participant exposure to environmental factors as part of the study. That could say which health problems are more likely for a child Farmer planting wheat on the Palouse, or an office worker in Seattle.
"It's the way all medical examinations should be done in the future," said Debbie Nickerson, director of the Northwest Genomics Center.
It is similar to the famous Framingham Heart Study, which has tracked thousands of participants in a Massachusetts city for decades to uncover the common factors that lead to heart disease. But this study will follow people across the country and examine all diseases.
The information is summarized in a database and stored in a database accessible to everyone. However, only researchers are allowed to view data from individual participants, Dishman said.
Dishman, who is 50 years old and lives in Portland, was interned for his late Microsoft co-founder Paul Allen in his Silicon Valley think tank. When Allen heard that Dishman had paid hundreds of thousands of dollars to medical bills because he was not insured, Allen immediately offered to pay them. Dishman refused. Allen promised, "I'll make sure you're never uninsured again."
The program is open to adults over the age of 18 and includes the completion of a comprehensive medical history form and blood collection. Participants can get as much or as little health information as they want. For more information or to register, go to https://allofus.nih.gov/