PROVIDENCE – Chum Prom, a Cambodian immigrant who has lived in Rhode Island since 1996, didn’t even wince when nurse Angela Richard slid a needle into her right arm.
A mother of eight, Prom has likely had her fair share of encounters with needles. But this is the first time she is getting blood drawn for a DNA test.
It wasn’t curiosity about her ancestry that drove her to do it. For that matter, she could have turned to the many online services that do DNA testing. In fact, the reason behind her decision sat right next to her: her youngest son.
She said she did it to help “find the right medicine to cure the next generation.”
Prom is one of more than 880 Rhode Islanders who have signed up to participate in All of Us, an initiative of the National Institutes of Health to build a sprawling database for researchers to study.
It’s a monumental effort – with 817,000 participants across the U.S. so far – that began in May 2017. The goal, said Brave de la Cruz, a tour manager for NIH’s mobile All of Us initiative, is to build a databank that is representative of the country’s diverse population.
Scout, executive director of the National LGBT Cancer Network and an adviser to the All of Us initiative, said research has often overlooked minorities. Historically, research has skewed toward white males and overlooked women, LGTBQ people, and racial and other minorities.
“This is the exact type of research that particularly underrepresented populations have always wanted,” Scout said of the All of Us initiative.
Minnkyong Lee, deputy chief engagement officer for All of Us, stressed the importance of having diversity in the data that is gathered for research.
“If people who look like you are not included, then the outcomes from that data set … won't really benefit directly and go back to your communities,” Lee said.
A problem that has resulted from the lack of research diversity is mistrust of science, stemming as far back as the infamous Tuskegee syphilis study, where researchers observed Black men who were ill with the disease without offering treatment, although it had become widely available.
To overcome this legacy, All of Us is partnering with trusted community organizations. Recently, its mobile unit visited the Center for Southeast Asians in Providence’s Elmwood neighborhood, where volunteers and staff walked participants through the registration process and took blood, saliva and urine samples.
“Research should move at the speed of trust,” Lee said, emphasizing the importance of partnering with local trusted community-based groups.
Most of the benefits of participating in the research program are long term – perhaps in the form of new treatments designed for specific population groups or better understanding of how disease works among particular communities.
Lee said that with nearly a quarter of a million whole genome sequences, the All of Us databank is the largest genomic dataset in existence, though not all of the research is genome-based. Already the data have yielded more than 400 publications and thousands of new genetic variants.
“Being a former researcher in the lab, even just to get 100, even 200 samples as a grad student or a post-doctoral fellow, it’s really hard to make your own dataset that way. … It's a whole new world for many researchers out there to have access to something of this size,” Lee said.
There are some tangible benefits to participating in the program. For example, the research initiative has returned personalized DNA results to 100,000 participants. From these, they can get glimpses into whether they have a heightened risk for a disease or if there are medicines that may not agree with a person’s genetic composition.
Even participating and answering questions about one’s health empowers a person to advocate for his or her health, Scout said.
But he stressed the importance of participating in the data-gathering efforts. Without evidence, he said, there is no funding to do research.
The All of Us mobile unit will be stationed at Progreso Latino at 626 Broad St. in Central Falls, July 9 to 12 from 10 a.m. to 4 p.m. To learn more and join the program, go to allofus.nih.gov.
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