How Rochester medical research events will help you discover your ancestry, health risks
A series of federal medical research events in Rochester are seeking people willing to share their health story and information to aid the push to reduce health inequality in New York and across the country.
The National Institutes of Health’s All of Us Journey — a traveling, hands-on exhibit that raises awareness about the All of Us Research Program — will be held this month at Ibero American Action League Inc, International Plaza and University of Rochester Medical Center.
The stakes of improving diversity in medical research are crystal clear in the Rochester area, where people of color and those living in poor neighborhoods are suffering the steepest drops in life expectancy in recent years.
Why consider participating in All of Us?
At first, Michelle Anderson, a retired nurse, who is Black, was very skeptical when she first heard about the All of Us program events near her Massachusetts home in 2022, USA TODAY Network reported.
"I had flashbacks of stories and history and all those things the average African American thinks about when you mention research," she said, referring to the nation’s history of racism and abuses in medical experimentation.
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What changed Anderson’s mind was learning about the program’s privacy protections, as well as the sense of empowerment it provided by giving her a role in helping to shape the push for health equality.
Anderson’s program results, including genetic testing, also confirmed her body metabolizes medicines more slowly than average, which allowed her to participate more proactively in her own health care treatment.
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Where are All of Us events in Rochester?
The program events in Rochester have been set to run through May 24.
The event today is at University of Rochester Medical Center, 265 Crittenden Blvd., behind Saunders Research Building. There are also events May 21 through May 24 at Trillium Health, 259 Monroe Ave. All these events run from 10 a.m. to 4 p.m.
These events include an opportunity for visitors to sign up to participate in the program.
If you join All of Us and provide biosamples, like blood or saliva, you may choose to learn more about your DNA, including:
Your genetic ancestry
Your risk for certain hereditary diseases
There is no cost to participate other than some of your time. Most people will spend no more than a few hours a year taking part in the program's activities, the program website noted.
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What is the All of Us Research Program?
The research program has a goal of collecting medical data on 1 million Americans to better understand the nation's diversity. Among the first 500,000 participants, more than 60,000 had Hispanic ancestry, which is about four-times more than any previous study at the time in 2022.
Prior genetic studies have largely included people of European ancestry, but findings might be different for people from other backgrounds.
About half the All of Us participants who had their genes sequenced as of 2022 identified as belonging to a racial or ethnic minority and even more are either low-income, have a disability, live in a rural location or are otherwise historically underrepresented in research.
"The fundamental driver of the program is diversity," said Dr. Josh Denny, chief executive officer of the All of Us Research Program.
What kind of information can people learn by participating?
Like the for-profit genetic information systems, All of Us lets participants know what their genes show about their ancestry. Other information returned to participants includes data on lactose intolerance and other food-related findings.
Only about 3% to 5% of participants will learn that they have a high risk for 59 genetic diseases like the BRCA1 and BRCA2 genes that predispose women for breast and ovarian cancers and men for breast and prostate tumors.
All 59 are "actionable," meaning someone can do something to reduce their risk of disease if they are found to have one of these mutations.
To learn more about the All of Us Research Program, visit JoinAllofUs.org/tour
Karen Weintraub of USA TODAY contributed to this report
This article originally appeared on Rockland/Westchester Journal News: All of Us event can help you discover ancestry, health risks
