The University of Iowa has joined an effort to help educate Americans in a federal initiative that calls for a million people to share their DNA in the name of science.
This past week, the National Institutes of Health launched a precision medicine study — or a model that customizes individual health care based on genes, environment and lifestyle — called the All of Us Research Program.
Researchers from the National Institutes of Health hope to gather data from at least one million people over the next 10 years.
All of Us aims to “accelerating research and improving health” by building a database of genetic, health and behavioral data on the American population, according to the National Institutes of Health.
To do that, the public is asked to voluntarily provide their own health information, such as family history, electronic medical records, diet and exercise habits and, for some, blood and urine samples.
A team of UI faculty members was selected as recipients of two separate grants to aid the federal research initiative.
One, awarded to the university this past September, is to support the National Institutes of Health’s initiative to help people make informed decisions on their health based on the All of Us database.
The second, awarded a year ago, is to help educate the public on the research initiative.
SPREADING THE WORD NATIONWIDE
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To build a database that is representative of the diverse American population, the initiative aims to reach communities that were underrepresented in past research — which for the most part was conducted with white males, said Linda Walton, director of the UI Hardin Library for the Health Sciences.
The UI was awarded a $3.6 million grant over a three-year period to inform the public of the study as a regional office for the National Library of Medicine, which is a part of the National Institutes of Health.
The university will do so by creating and distributing content on the study and the why people should participate. This month marks the first year of the three-year education initiative.
“We’re not enrolling (people into All of Us), we’re just trying to facilitate an environment that might be conducive to more people enrolling,” said Rema Afifi, community and behavioral health professor in the College of Public Health.
UNDERSTANDING THE DATA
This past September, the UI’s Hardin Library was awarded another grant from the National Library of Medicine — a five year, $6.5 million grant to help the public make informed decisions on their health.
Afifi, Campbell and Walton are the co-principal investigators on the $6.5 million grant.
In principle, the All of Us initiative will determine “how genetics or your biology or your lifestyle and your environment all come together to determine your health and disease,” said Colleen Campbell, assistant director of the Iowa Institute of Human Genetics, which is based in the UI’s Carver College of Medicine.
“Some people say, ‘Well, it’s in my DNA, there’s nothing I can do about it,’” Campbell said. “But the reality is that you may have a higher risk for developing diabetes, for example, based on your family history and DNA, but there are also things you can do with your lifestyle and environment to mitigate those risks and help prevent diabetes or manage diabetes.”
As the database is built, the information from participants could discover health trends in the United States, such as regions or populations that are more susceptible to certain diseases or conditions.
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Through the $6.5 million funding, multidisciplinary team from the university — which includes faculty members from the colleges of public health, education, medicine as well as the Hardin Library — will help others understand the information, with the hope that it will help individuals make informed decisions on their health care based on the data.
“As they get that information, they’re going to want quality information about what it all means,” Walton said.
And the UI hopes to do that through public libraries.
“Public libraries are already starting to get into this business of consumer health and health information,” Afifi said. “We’re trying to facilitate that, and we’re trying to facilitate it by also making sure they have the tools to reach out into their communities, understand who is a part of their community.”
The university team plans to help libraries do so by providing materials, online courses and other educational tools to share with the people in their community. For example, if a public library is located in a region that has higher rates of heart disease, the university will help provide tools to help librarians educate their patrons on preventing or maintaining the condition.
Campbell said the UI’s role also is to help these public libraries understand the differences between direct-to-consumer genetic tests, research studies such as the All of Us program and clinical genetic tests ordered by health care providers.
However, some across the country are voicing concerns on the privacy of these DNA databases, particularly after Facebook was criticized for its data-sharing practices. Law enforcement in California used a free genealogy website to track down a suspected serial killer.
The National Institutes of Health has assured the public it has taken many steps to safeguard the information sent to the database. The names or any identifying information of those who submit their health data will not be included in the database, according to the All of Us website.
For more information on the All of Us Research Program, visit www.allofus.nih.gov.
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