October 12, 2020 | By Chuck Carlson
Diversity and inclusion in America could be going in an intriguing direction in the medical field if a new National Institutes of Health (NIH) pilot program proves successful.
And Albion College can play a significant role.
Titled All of Us, the program is wide-reaching and even a bit daring as it studies and collates information on the health history of Americans, many from diverse and underrepresented backgrounds. NIH is parnerting in this pilot program with the American College Health Association and Scripps Research Translational Institute.
The program, which officially began October 5, hopes to register at least one million people nationally for the long-term study and has recruited five U.S. colleges and universities, all with significantly diverse populations, to build the largest, most diverse health resource of its kind by asking participants to share their health information.
Albion College was selected for the program along with Texas Southern University, University of Louisville, California State Polytechnic University-Pomona and Florida International University.
The goal is to build the most diverse biomedical data resource available and to help researchers gain better insights into the biological, environmental and behavioral factors that influence health.
Data from such a large and diverse group of people will enable scientists to see patterns in how different factors—from genetics to lifestyle habits—impact a person's health, why some people respond differently to the same condition or treatment, and ultimately how to treat each person based on their unique health story.
Dr. Brad Rabquer, director of Albion’s Lisa and James Wilson Institute for Medicine, believes the College's emphasis on diversity, inclusion and belonging was an important reason for its selection. But he also believes it goes deeper than that—that this study can play an important role in health equity.
"The College has moved beyond merely diversifying the student body,” Rabquer says. “Increasing student diversity is necessary, but not sufficient. We're now actively building academic and student support structures to ensure the success of all Albion College students. Our partnership with the NIH's All of Us program builds off this theme of equity, as it seeks to ensure equal representation for all races and ethnicities in medical research.”
Wilson Institute Assistant Director Maggie Godfrey, who will coordinate Albion’s participation in the program, says the program could have a long-term impact in the medical field.
“It’s precision medicine,” she explains. “It’s like wearing a pair of glasses. You need glasses and I need glasses, but yours may not work for me, so you need to go deeper. It makes it a fun challenge for our students. And it’s a way to say, ‘How can we relate to students who have no interest in medicine?’ And I think having a structure like the Wilson Institute and two very motivated Wilson Institute students is helpful.”
Those two motivated students are Anna Crysler, ‘22, from Rockford, Mich., and Irene Corona Avila, ‘22, from Lawrenceville, Ga. Both are biochemistry majors with a deep interest in biomedical research. Crysler is looking at a career in research while Avila is looking into neurosurgery.
They will serve for at least five months as Student Engagement Associates for the program and will spread the word, through everything from small “elevator” talks to classes on campus to social media alerts, about what All of Us entails, its benefits and what it can mean to the future of medicine. There is also a website that can be accessed for more information.
And, of course, the main goal is to sign up as many people as possible.
“We’re trying to aid in the process,” Crysler says. “College campuses are full of 18-to-22-year-olds who want to get involved. Our country prides itself on having people from all backgrounds, and scientific research doesn’t reflect that. This is positive change toward truly representing everyone.”
Avila signed up for similar reasons.
“I’ve read so many pieces and been in so many classes that talked about how there was so much racism in terms of diversity, and I wanted to be part of something that understood these disparities,” she says. “And I want to be an advocate for minorities. I thought this would be a great opportunity to do both.”
The program, while focused on the underrepresented population, is open to everyone and Godfrey makes clear that not only students, but faculty and staff, can volunteer as well. And, in a perfect world, these volunteers will make a long-term commitment to the study.
“NIH gives participants the option to go as deep as they want,” she says. “The information is going into a researcher database and it’s a basic survey. There are questions about lifestyle and personal questions about health. They will be invited to submit salivary samples and everything the researchers find is released back to the participant. Certain participants will be selected to submit a blood test for DNA and genetic makeup and they will let the participant know about it. The goal is to diversify research and mitigate health disparities.”
Godfrey acknowledges there could be questions about privacy issues but emphasizes that it is a voluntary program and people can leave whenever they choose.
“We’re not tracking names of students and how far they participated,” she says. “This is a longitudinal study and hopefully we have these students as participants for about 10 years. They may hear once or twice a year if there’s a new survey. Maybe they might be contacted for a saliva test. And if they decide, they can opt out at any time. NIH is very transparent about their protocol and how they protect privacy. Once their information is submitted, the only people who will see it are NIH researchers.”
She adds that participants receive all health and genetic information back from All of Us researchers about the data they provide, which may help them learn more about their health.
“It's important to understand that participants are not only giving information but receiving information specific to them,” Godfrey says.
Both Avila and Crysler believe this program can be a game-changer for medicine.
“Our primary goal is to recruit and educate students on the disparity in the medical field,” Avila says. “Hopefully they’ll contribute to this research and we hope they know this will help them out. Hopefully we’re able to educate them to understand this will help doctors, who can then help you out the best way they can.”
“The concept of precision medicine is one size doesn’t fit all,” Crysler says. “Everyone’s involved, so their health care is tailored to the individual. And with everything coming to light this summer with social activism, this is a chance to represent their community. It will be a motivator.”