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National Institutes of Health launches research program based on patient data

Janice Phillips, a participant in the program, looks over materials at the launch for All of Us, a National Institutes of Health research program Sunday at Millennium Park's Chase Promenade South. | Rachel Hinton/ Sun-Times

The National Institutes of Health launched its biobank research program Sunday, bringing Chicago medical professionals together for the launch of its national initiative to diversify and broaden its research.

The Chicago event, hosted at Millennium Park’s Chase Promenade South, is one of eight simultaneous events happening across the country to mark the launch of us All of Us. The research program aims to recruit 1 million people in order to advance individualized prevention, treatment and care for people of all backgrounds.

The Illinois Precision Medicine Consortium received a five-year, $51 million grant to help launch this landmark longitudinal research effort central to the Precision Medicine Initiative from the institutes of health.

On Sunday, members of the consortium, which includes Northwestern Medicine, University of Illinois at Chicago and Rush University Medical Center, among others, talked to interested Chicagoans about the program.

Joyce Ho, lead investigator for the program at Northwestern Medicine, said that the day was about getting people signed up to donate their samples, like blood, urine and physical measurements, at a later date.

The samples will be used to help research be more inclusive — research samples commonly came from European men — and hopefully lead to medical breakthroughs in chronic diseases.

“We’re trying to introduce the idea of biological research to more and more people in the U.S.,” Ho said. “We want the data to be diverse and representative of all who live in the country.”

The health data gathered from participants will be stored in a database and only approved researchers will be able to access it. Researchers will then study how factors like environment, lifestyle and genes can impact health.

“Right now medicine is a one size fits all field,” Veronica Robinson said. “Everything that’s good for me may not be good for you. What better way to fix that than this, than precision medicine.”

But for the program to work, people from all backgrounds would need to cough up some genetic material first. That may include lifestyle and medical data from people across the United States to provide the most diverse biomedical data resource in history.

As the great-granddaughter of Henrietta Lacks, Veronica Robinson said a program that can personalize treatment would help advance the field.

“Right now medicine is a one size fits all field,” Robinson said. “Everything that’s good for me may not be good for you. What better way to fix that than this, than precision medicine.”

At Saturday’s launch, people came to learn more about the program and ask questions. Mazell Burns, 71, said she heard about the program on the radio and immediately made her way downtown.

“I’m from the same background as [Henrietta] Lacks, so I thought I need to come here and find out more about this program,” Burns said. “I do think it’s a little questionable with hacking and all of that, and it raises concerns, but I’m mostly curious just curious about the program right now.”

Members of the Illinois consortium, as well as the National Institutes of Health, said those concerns were valid, and they’ve stripped identifiers from the data they’ve already collected and brought in white hat hackers to point out holes in the data system’s security.

For Rush University professor Janice Phillips, who became a participant in the beta program through the school, contributing to changing treatment and making treatment more personalized outweighed the questions she had about security.

“This is a very bold approach to data collection and gathering from a large number of people for a large repository of information from people of all walks of life,” said Phillips, who is also the research director of nursing research and health equity.

“I think that information will accelerate health research, but also we’re looking to make sure we have individuals who represent diverse groups that are often underrepresented.”

Miriam Guzman, who works at Northwestern and is also a participant in the beta program, said she decided to join the program to be part of the changing forefront of medicine.

Guzman said her own chronic health issues — she’s the fourth generation in her family with Type 1 diabetes — also prompted her to donate her blood and other samples.

As a member of the national advisory panel for the program, she hopes she can guide the study and provide a voice to address the issues communities face.

“We’re now talking about tailoring medicine to individual needs, and this is an opportunity to include people … and tackle health disparities from a medical standpoint,” Guzman said. “This is an opportunity for inclusion, to be a willing participant and say, ‘I want to be part of the future of medicine and I want treatment to look like me.'”