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SALT LAKE CITY — Genetics play a key role in the treatment of disease, and the more doctors know about a person’s genes can help them determine the best path to better health.
“Our bodies don’t all respond the same to different medications or different treatments and a piece of that is because of our genetic makeup,” said Louisa Stark, a professor of human genetics and director of the Genetics Science Learning Center at the University of Utah.
The center, which hosts one of the most-used science-related websites, was recently awarded a major grant to assist with the National Institutes of Health’s All of Us research program. Stark said her team will work with community representatives to develop educational materials for the public and educate them about the role genetics can play in medicine.
“Genetics is a really hard concept for a lot of people to understand,” she said.
All of Us hopes to enroll at least a million people living in the United States to study their genetics, lifestyle and environment, and how it all plays a role in their health. The nationwide study needs help from the U. to get people interested and keep them involved in the long-term project.
So far, more than 248,000 people across the U.S. have joined the program, with 189,000 having completed the initial steps “to build the most diverse biomedical data resource of its kind, to help researchers gain better insights into the biological, environmental and behavioral factors that influence health,” the NIH states.
“It’s only through having a lot of people involved that science can learn the variations among people, because we all have different interactions with genetics, lifestyle and environment, all of which influence our health,” Stark said.
The U. has been awarded $1.6 million for the first year and can earn up to $8.7 million for the next five years if the center delivers on its initial task, which Stark said is a big job.
The most important thing they will do, however, is bring together people from diverse communities across the state to discover what about genetics is of most interest to them.
Having a diverse set of people participate in the program is important, as Stark said, everyone responds differently to different treatment protocols.
“Many communities have been left out of research in the past, and we want to change that,” said Eric Dishman, director of the All of Us research program. “Beyond raising awareness, we want to gain participants’ trust and work together to speed up medical breakthroughs.”
In addition to the U., the National Institutes of Health also awarded HCM Strategists, of Washington, D.C., with over $7 million to do roughly the same thing — “develop innovative approaches to educate communities and support enduring relationships with program participants,” according to the NIH.
The University of Utah, the federal funding arm states, “brings significant expertise in experiential learning.”
Learn.genetics.utah.edu and teach.genetics.utah.edu have more than 16 million visitors and 60 million page views each year, most of them teachers and students in schools, including colleges and universities, across the globe. The information is popular among people who want to know more about science and health, Stark said.
And, it is constantly being updated.
“The Genetic Science Learning Center has built expertise in explaining all these concepts to the public,” Stark said, adding that the NIH grant is the biggest award the center has ever received.
Funded entirely by grants and contracts, the latest NIH investment, while highly competitive, is incredibly important to the center.
“We’re very excited about it,” Stark said.
The team, which includes scientists, instructional designers, curriculum developers, multimedia producers, developers, artists, film crew and even a music composer, will spend the next year in development, meeting with members of the public, implementing materials and evaluating how they work. They will work closely with the U.’s Center for Clinical and Translational Science to identify people in Utah who can best serve on community advisory boards.
“It’s a lengthy process to come up with high-quality materials,” Stark said, adding that her team hopes to develop a variety of ways people can interact with information.
“We have a goal to educate what is possible in medicine,” she said, noting that precision medicine, “getting the right treatment to the right individual at the right time,” is becoming more of the norm and the aim of physicians throughout the world.
“These awardees bring tremendous knowledge and a proven track record in community engagement, which will be critical in the program’s work to foster ongoing conversations with the public and build authentic relationships over time,” said Dr. Dara Richardson-Heron, chief engagement officer of the All of Us research program. “Our ultimate goal is a shared one — to improve the health of all communities for the benefit of all people.”
For more information or to join the program, visit JoinAllofUs.org or allofus.nih.gov.
