Fact check: Robert F. Kennedy Jr. is wrong about a ban on NIH research about mass shootings

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By Louis Jacobson | KFF Health News (TNS)

“Congress prohibits the NIH from researching the cause of mass shootings.”

Robert F. Kennedy Jr. in an April 21 post on X

____

The National Institutes of Health is the federal government’s main agency for supporting medical research. Is it barred from researching mass shootings? That’s what presidential candidate Robert F. Kennedy Jr. said recently.

Kennedy, whose statements about conspiracy theories earned him PolitiFact’s 2023 “ Lie of the Year,” is running as an independent third-party candidate against President Joe Biden, the presumptive Democratic candidate, and the presumptive Republican nominee, former President Donald Trump.

On April 21 on X, Kennedy flagged his recent interview with conservative commentator Glenn Beck, which touched on gun policy. Kennedy summarized his gun policy views in the post, writing, “The National Institutes of Health refuses to investigate the mystery; in fact, Congress prohibits the NIH from researching the cause of mass shootings. Under my administration, that rule ends — and our kids’ safety becomes a top priority.”

But this information is outdated.

In 1996, Congress passed the “ Dickey Amendment,” an appropriations bill provision that federal officials widely interpreted as barring federally funded research related to gun violence (though some observers say this was a misinterpretation). Congress in 2018 clarified that the provision didn’t bar federally funded gun-related research, and funding for such efforts has been flowing since 2020.

Kennedy’s campaign did not provide evidence to support his statement.

What Was the Dickey Amendment?

After criticizing some federally funded research papers on firearms in the mid-1990s, pro-gun advocates, including the National Rifle Association, lobbied to halt federal government funding for gun violence research.

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In 1996, Congress approved appropriations bill language saying that “none of the funds made available for injury prevention and control at the Centers for Disease Control and Prevention may be used to advocate or promote gun control.” The language was named for one of its backers, Rep. Jay Dickey (R-Ark).

But the Dickey Amendment, as written, did not ban all gun-related research outright.

“Any honest research that was not rigged to produce results that helped promote gun control could be funded by CDC,” said Gary Kleck, a Florida State University criminologist. But CDC officials, experts said, interpreted the Dickey Amendment as banning all gun-related research funding.

This perception meant the amendment “had a chilling effect on funding for gun research,” said Allen Rostron, a University of Missouri-Kansas City law professor who has written about the amendment. Federal agencies “did not want to take a chance on funding research that might be seen as violating the restriction” and so “essentially were not funding research on gun violence.”

Also, the Dickey Amendment targeted only the CDC, not all other federal agencies. Congress expanded the restriction to cover NIH-funded research in 2011.

Although the Dickey Amendment didn’t bar gun-related research, federal decision-makers acted as though it did by not pursuing such research.

Moving Past the Dickey Amendment

Over time, critics of the gun industry made an issue of the Dickey Amendment and gathered congressional support to clarify the amendment.

In 2018, lawmakers approved language that said the amendment wasn’t a blanket ban on federally funded gun violence research. By 2020, federal research grants on firearms began to be issued again, starting with $25 million to be split between the CDC and NIH.

By now, the CDC and NIH are funding a “ large portfolio” of firearm violence-related research, said Daniel Webster, a professor at the Johns Hopkins Bloomberg School of Public Health.

Also, the Justice Department’s National Institute of Justice has funded the largest study of mass shootings to date, Webster said, and is seeking applications for studies of mass shootings.

Our Ruling

Kennedy said, “Congress prohibits the NIH from researching the cause of mass shootings.”

Although the Dickey Amendment, a provision of appropriations law supported by the gun industry, didn’t prohibit all federally supported, gun-related research from 1996 to 2018, decision-makers acted as though it did.

However, in 2018, Congress clarified the provision’s language. And since 2020, CDC, NIH, and other federal agencies have funded millions of dollars in gun-related research, including studies on mass shootings.

We rate Kennedy’s statement False.

(KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.)

©2024 KFF Health News. Distributed by Tribune Content Agency, LLC.

Stormy Daniels tells jury about sexual tryst with Trump at hush money trial; his lawyers’ request for mistrial is denied

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Molly Crane-Newman and Josephine Stratman | New York Daily News

NEW YORK — Stormy Daniels told a riveted jury Tuesday that sex with Donald Trump made her feel dizzy and had the room spinning as she wondered how she ended up half-naked in a Lake Tahoe hotel room with the then-reality TV star at the former president’s hush money trial.

Her testimony sparked a demand by Trump’s lawyers for a mistrial – which was denied.

In one of the trial’s more surreal moments, the porn star recounted her tryst with Trump in 2006 as the former president looked on with a scowl.

“What could possibly go wrong?” she remembered her publicist telling her, encouraging her to go to meet with Trump. Daniels thought it could be a good business opportunity since she wrote and directed and wanted to branch out from only adult films.

Daniels and Trump met at his hotel room, which was “three times the size” of Daniels’ apartment, where they chatted about the business of the porn industry and had a “very brief” discussion of Melania, Trump’s new wife.

Trump wore a silk pajama set, which Daniels, which she made fun of, asking him if “Mr. Hefner knew you stole his pajamas?”

Trump changed.

He suggested that she come on “The Apprentice,” telling her she was “smart and blond and beautiful,” just like his daughter.

“You’re not just a dumb bimbo,” he told her, Daniels said. “You’re more than people think.”

At one point, Daniels went to use the bathroom. When she came back out, Trump was perched on the bed, striking a pose in just his boxers and a t-shirt.

“At first, it was just startling, like a jump scare,” she said. “I wasn’t expecting him to be there, especially minus a lot of clothing.”

Trump watched from the defense table, glowering at points and muttering to himself and his lawyers. During much of her testimony, he kept his eyes trained on the ceiling.

“I felt the room spin in slow motion,” she said, wondering how she misread the situation to end up in this position. “I felt the blood leave my hands… almost like when you stand up too fast.”

She tried to crack a joke and leave, but Trump blocked her exit. Daniels said there was an “imbalance of power” but that she wasn’t threatened.

“The next thing I know, I was on the bed, somehow on the opposite side,” she said. “I had my clothes and my shoes off. My bra however was still on. We were in missionary position.”

Afterward, Daniels said she was ashamed, telling “very few people” that they’d had sex.

Trump continued to call her after, ringing her up several times a week.

“He always called me honeybunch,” she said.

Trump didn’t ask her to keep the encounter confidential, Daniels said.

Move for mistrial denied

Daniel’s explosive testimony prompted a demand by Trump’s lawyers for a mistrial — which Judge Merchan promptly denied.

Trump lawyer Todd Blanche said Stormy Daniels’ testimony in the morning was “unduly and inappropriately prejudicial to President Trump,” and asked the court to severely limit her testimony at the “next trial.”

The parts of the testimony Trump’s team took issue with included her testimony on condom use during sex, their differing heights and the power dynamic between the two.

“This is the kind of testimony that there’s no coming back from,” Blanche said.

Susan Hoffinger countered that the defense opened the door in opening statements by making claims about Daniels, impugning her character and credibility. She said she was extremely mindful not to elicit too much testimony.

“At the end of the day, your honor, this is what the defendant was trying to hide.”

Daniels sheds light on hush money deal

Daniels also testified about the hush money deal that lies at the heart of the case against Trump.

She said she was approached in a parking lot in 2011 when she was with her infant daughter, she said, where she was “threatened” and told not to share her story. Scared, she kept mum on it.

Then, after Trump announced his candidacy in 2015, Daniels’ agent approached her about telling her story. She talked it over with a lawyer and decided to share it.

Prosecutor Susan Hoffinger asked whether this decision was guided by what happened to her in the parking lot and wanted to ensure it was documented.

“Yes,” Daniels said.

Daniels also testified that it was her and her agent’s idea to sell the story to news outlets.

“My motivation wasn’t money, it was to get the story out,” Daniels said adamantly after Hoffinger asked if she wanted lawyer Keith Davidson to negotiate with Cohen for money. “I was motivated out of fear and not money.”

Daniels understood Trump to be the beneficiary, that neither of them could acknowledge knowing the other, and that she would be liable for $1 million “every time I said something”

“I was afraid that if it wasn’t done before the nominations and things, then I wouldn’t be safe,” she said, then clarifying she meant the election.

Stormy sworn in

Daniels sashayed up to the witness box, swore to tell the truth, and spelled out her stage name. Trump turned his head and looked at her just before she took her seat. He averted his eyes from her at points, looking up at the ceiling as she spoke.

The adult film actress, who told the jury her real name is Stephanie Clifford but prefers going by Stormy, began her day in court talking about her Louisiana upbringing, religious schooling and getting into tap dance.

She got into exotic dancing after a friend invited her to see her dance. Daniels thought it “was the same kind of dancing I did.” It was not. Years later, at 23, she got her start in porn after agreeing to be a clothed extra in one film.

The former president’s legal team began the day’s proceedings asking Judge Juan Merchan to prevent her from divulging “salacious” details of their alleged tryst more than a decade ago.

But prosecutor Susan Hoffinger said it was vital for the prosecution to establish the credibility of Daniels, whose real name is Stephanie Clifford, promising, “It’s not going to involve any details of genitalia.”

Merchan said he would allow limited testimony on the topic.

Daniels has long alleged she slept with Trump at a 2006 charity golf tournament in Lake Tahoe, not long after his marriage to Melania and less than a year after the birth of his youngest child.

When she testified at her former lawyer Michael Avenatti’s trial, at which he was accused and ultimately convicted of stealing her advance book proceeds, the adult film star rejected descriptions of the encounter as an affair.

“I don’t consider getting cornered coming out of a bathroom to be an affair,” Daniels testified.

Jurors last week heard extensive testimony from her lawyer in 2016, Keith Davidson, who told the court about Michael Cohen’s eleventh-hour effort to pay her off before the election Trump won to ensure the electorate wouldn’t learn of her claims before heading to the polls.

Daniels first sought to go public about the tryst with Trump in a 2011 interview with InTouch, but the story was killed after Cohen threatened to sue. The magazine published her claims years later, in March 2018, reporting that it had corroborated her claims with her ex-husband and that she’d passed a lie detector test.

Trump is facing 34 felonies in his Manhattan criminal case, all of which he denies, alleging he covered up his reimbursement to Cohen for paying off Daniels after he took the White House.

Prosecutors say the payments came as the last stage of a scheme to influence the results of the 2016 election first devised at Trump Tower between Trump, Cohen, and former tabloid publisher David Pecker.

On Monday, jurors saw the 2017 checks to Cohen bearing Trump’s famous spiky signature and handwritten notes by his former finance chief calculating the fixer’s debt for handling the hush money deal.

Trump’s defense has claimed that he didn’t know about the payment and believed he was paying his then-personal lawyer for legitimate legal work.

“We didn’t put it down as construction costs, the purchase of sheetrock, the electrical costs,” Trump said on his way into court on Tuesday morning. “The legal expense that we paid was put down as legal expense. There’s nothing else you could say.”

During testimony by Hope Hicks on Friday, Trump’s former campaign press secretary and White House communications chief said Trump acknowledged Cohen had paid off the porn star when it was first reported in detail, claiming to her he didn’t know about it and that Cohen did it out of “the kindness of his heart.”

Hicks conceded that would be out of character for Cohen, casting doubt on the likelihood he didn’t expect to be paid back.

——-

©2024 New York Daily News. Visit at nydailynews.com. Distributed by Tribune Content Agency, LLC.

Inside the far-right plan to use civil rights law to disrupt the 2024 election

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Sarah D. Wire and Mackenzie Mays | Los Angeles Times (TNS)

SACRAMENTO, Calif. — At a diner just off the freeway north of Sacramento, a mostly white crowd listened intently as it learned how to “save America” by leaning on the same laws that enshrined the rights of Black voters 60 years ago.

Over mugs of coffee and plates of pot roast smothered in gravy, attendees in MAGA and tea party gear took notes about the landmark Voting Rights Act and studied the U.S. Constitution. They peppered self-proclaimed “election integrity” activist Marly Hornik with questions about how to become skilled citizen observers monitoring California poll workers.

The nearly 90 people gathered in the diner in February were there to understand how they can do their part in a plan to sue California to block certification of the 2024 election results unless the state can prove that ballots were cast only by people eligible to vote.

If any votes are found to be ineligible, Hornik explained, then all voters are being disenfranchised — just like those decades ago who couldn’t vote because of their race.

“If we think our right of suffrage … has been denied or diluted, we have to stop that immediately. We have to stop it right in its tracks,” said Hornik, co-founder of a group called United Sovereign Americans, which is led by a man who helped push former President Donald Trump’s baseless challenges to Joe Biden’s election in 2020.

The two-hour meeting at the Northern California diner — one of several similar presentations that have taken place across the country in recent months — is part of the group’s plan to file lawsuits in multiple states alleging voters’ civil rights are violated by errors on the voter rolls. The goal is to prevent states from certifying federal elections in 2024 until substantial changes are made to election processes.

What United Sovereign Americans has planned is a legal long shot. But election experts worry that if even one sympathetic judge rules in their favor, it could sow doubts about the integrity of a presidential rematch between President Biden and Donald Trump.

“Sometimes the whole point is to whip up enough smoke that it seems like a fire,” said Justin Levitt, a former deputy assistant attorney general who specializes in voting rights.

The group’s legal arguments rely on faulty interpretations of federal election law and are likely to fail in court, according to Levitt and other experts who believe the group’s evidence of voter registration fraud is overstated and inaccurate.

United Sovereign Americans is part of a cottage industry of far-right election deniers that has sown disinformation since Trump lost his reelection bid. The group aims to scrutinize elections with a legal strategy that can “throw massive amounts of sand in their gears,” Hornik said during a February presentation in Orange County.

Its first lawsuit in the multi-state plan was filed against Maryland election officials on March 6, alleging that the state’s voting policies don’t comply with federal laws requiring accurate voter roles and thus violate the plaintiffs’ civil rights. The suit asks the court to keep the State Board of Elections from certifying any election until their claims of voter roll irregularities and other election law violations have been resolved, an action that could potentially derail Maryland’s May 14 primary. On April 22, Maryland asked the judge hearing the case to dismiss the lawsuit or, at a minimum, deny the request for the restraining order.

Similar lawsuits are expected in coming weeks in California, Ohio, Illinois, Texas and several other states, Hornik said in an interview. Once they have built a legal fund for the suits, her group plans to file in multiple federal jurisdictions in hopes that judges will rule differently in different areas of the country, causing the Supreme Court to step in and settle the issue ahead of election day, she said.

Marly Hornik, co-founder of United Sovereign Americans, speaks at a Sacramento diner in February 2024. (Mackenzie Mays/Los Angeles Times/TNS)

An ‘ecosystem of grift’

Hornik said she lives in rural upstate New York with her “three home-birthed children” and a small herd of dairy goats. The self-described “home school mom” has long gray hair and the air of a patient teacher as she fields questions and flips through PowerPoint slides explaining her plan to disrupt America’s elections.

She drew laughs from the crowd in Sacramento as she cracked jokes about COVID protocols drawing people into “a medical experiment.”

Hornik became involved in an online community questioning election results while stuck at home during the early months of the COVID-19 pandemic, then went on to create a group called New York Citizens Audit in 2021. Its members spread conspiracy theories about the results of the 2020 and 2022 elections at events across the state.

In September, the New York attorney general issued a cease-and-desist letter ordering Hornik to stop “voter deception and intimidation efforts,” describing complaints that volunteers with her group had “confronted voters across the state at their homes, falsely claimed to be Board of Elections officials and falsely accused voters of committing felony voter fraud.”

Hornik said at the time that the group was not knocking on doors.

She expanded her efforts after teaming up with Harry Haury, whom she met at a 2022 conference hosted by the group that funded the debunked pro-Trump propaganda film “2000 Mules,” which is based on lies about the 2020 election.

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Haury, a St. Louis native with deep ties to the “Stop the Steal” movement, approached Hornik about nationalizing the work of New York Citizens Audit. Haury had been part of a little-known team of self-proclaimed cybersecurity experts who helped search for evidence of fraud in the 2020 election for some of Trump’s closest allies in the weeks after Trump lost. Haury’s background as a software engineer has largely been focused on energy technology.

Together, they created United Sovereign Americans and began recruiting activists in at least 20 states to obtain voter registration rolls and analyze the data for potential errors — such as a person registered at multiple addresses or dead people with active registrations.

Hornik said they have completed examinations of voter rolls in Ohio, Illinois, New York and Texas, and they are finishing that work in California. Florida, Missouri and North Carolina are close behind.

In California, they are working with Election Integrity Project California, a nearly 15-year-old group that has been sending election observers to the polls since 2012. Linda Paine, a former Santa Clarita tea party activist now living in Arizona who leads the group, hosted Hornik for a three-day speaking tour in February with stops in Fresno, Shasta and Ventura counties.

A federal lawsuit that Election Integrity Project California filed to challenge the state’s election laws and procedures was dismissed, but the group has appealed.

The group has trained hundreds of poll watchers to observe whether local officials are following proper election procedures, including during the attempted recall of Democratic Gov. Gavin Newsom in 2021.

Paine did not respond to requests for an interview.

David Becker, who leads the Center for Election Innovation & Research, a group focused on restoring trust in the nation’s election system, described the work of Paine and Hornik as “an effort to dismantle election integrity under the auspices of election integrity” amid an “ecosystem of grift.”

“The grifters have evolved,” Becker said. “They used to just say, ‘There’s so many dead and illegal voters on the list.’ And then they started coming up with a really specific number … as if there was some analysis that went into that.”

The problem, he said, is that voter registration rolls obtained by these groups are a snapshot of a system that constantly changes as people move or die. It can’t be compared to a static event like an election result: “It is not possible to maintain a voter list that is accurate at every single second of every single day.”

As they’ve crisscrossed the country spreading misinformation about election procedures, Hornik and Haury have asked for donations at public events and on far-right media, saying they need millions of dollars for their lawsuits. Their website allows donors to pick which state effort receives funds, with up to half going to the national group. In Shasta County in February, Hornik urged attendees to think about what they can do to help save America in 2024.

“I want to ask you to really look inside yourself and ask yourself what are you called to do to help this mission?” she said, according to a recording of the event posted online.

“Are you called to participate? Are you called to come and work on the resolutions? Are you called to work on the legal briefings? Are you called to write me a $10,000 check today? Because we need money to get this done.”

Observers from the Election Integrity Project watch ballots being processed in Orange County during California’s 2021 gubernatorial recall election. (Allen J. Schaben/Los Angeles Times/TNS)

The civil rights claim

At the diner in Sacramento, Hornik told the crowd that her plan to sue states for alleged civil rights violations should be easier than challenging results based on election laws.

“We believe that this very simple approach can advance rapidly,” she said. “It doesn’t matter if you weren’t allowed to vote or if your vote was drowned and suffocated by invalid ballots, either way, you didn’t really get to vote.”

Hornik argues that people’s constitutional right to choose their elected representatives is violated when the power of lawful votes is diminished by votes cast illegally.

But the entire plan is based on a count of alleged errors in the voter rolls conducted by volunteers who lack expertise in the election system and election law. Hornik’s allies at Election Integrity Project California claim to have counted 257,894 people who voted in the state’s 2022 election despite potentially being ineligible to cast ballots. But they did not explain their criteria for identifying alleged discrepancies in the voter rolls, raising serious questions about their count.

The volunteer analysts’ work is reminiscent of past efforts by “armchair detectives” to examine voter rolls, said Levitt, the former deputy assistant attorney general. Their arguments claiming fraud are also based on fundamental misunderstandings of what is allowed under federal voting laws, he said.

“These are people sitting at home who don’t actually understand all that much about how the election structure works who are trying to impose their will on how the process is supposed to work on the government,” he said.

And their legal argument is based on a “really troubling” interpretation of civil rights law, said Sean Morales-Doyle, director of voting rights for the Brennan Center for Justice.

“The idea that somehow the votes of ineligible voters is drowning out the votes of eligible voters is not at all based on reality,” he said.

The concept of “vote dilution” stems from a provision of the Voting Rights Act that is meant to give people of color equal rights to elect the candidates of their choice. It typically comes up in disputes over drawing political boundaries where the preferences of a minority group could be diluted by a white majority that votes as a bloc.

“The notion that this puts them in a similar situation to people who are actually being disenfranchised is just not a fair or reasonable analogy,” Morales-Doyle said.

Hornik admits that her group does not expect to win a lawsuit against California. She said United Sovereign America intends to file lawsuits in least 11 states across nine federal court circuits. Failing in some and winning in others is part of the strategy to get to the Supreme Court, Hornik said.

“It doesn’t matter that we are going to get turned down in New York. It doesn’t matter that we get turned down potentially in California,” Hornik said. “It matters that we get a favorable ruling in Tennessee and Missouri. It matters that we get a favorable ruling in Texas so that there is a diversity of opinion and ultimately that also means that there is a possibility that the matter is settled for the entire country.”

©2024 Los Angeles Times. Visit at latimes.com. Distributed by Tribune Content Agency, LLC.

Genetics studies have a diversity problem that researchers struggle to fix

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Lauren Sausser | KFF Health News (TNS)

CHARLESTON, S.C. — When he recently walked into the dental clinic at the Medical University of South Carolina donning a bright-blue pullover with “In Our DNA SC” embroidered prominently on the front, Lee Moultrie said, two Black women stopped him to ask questions.

“It’s a walking billboard,” said Moultrie, a health care advocate who serves on the community advisory board for In Our DNA SC, a study underway at the university that aims to enroll 100,000 South Carolinians — including a representative percentage of Black people — in genetics research. The goal is to better understand how genes affect health risks such as cancer and heart disease.

Moultrie, who is Black and has participated in the research project himself, used the opportunity at the dental clinic to encourage the women to sign up and contribute their DNA. He keeps brochures about the study in his car and at the barbershop he visits weekly for this reason. It’s one way he wants to help solve a problem that has plagued the field of genetics research for decades: The data is based mostly on DNA from white people.

Project leaders in Charleston told KFF Health News in 2022 that they hoped to enroll participants who reflect the demographic diversity of South Carolina, where just under 27% of residents identify as Black or African American. To date, though, they’ve failed to hit that mark. Only about 12% of the project’s participants who provided sociodemographic data identify as Black, while an additional 5% have identified as belonging to another racial minority group.

“We’d like to be a lot more diverse,” acknowledged Daniel Judge, principal investigator for the study and a cardiovascular genetics specialist at the Medical University of South Carolina.

Lack of diversity in genetics research has real health care implications. Since the completion more than 20 years ago of the Human Genome Project, which mapped most human genes for the first time, close to 90% of genomics studies have been conducted using DNA from participants of European descent, research shows. And while human beings of all races and ancestries are more than 99% genetically identical, even small differences in genes can spell big differences in health outcomes.

“Precision medicine” is a term used to describe how genetics can improve the way diseases are diagnosed and treated by considering a person’s DNA, environment, and lifestyle. But if this emerging field of health care is based on research involving mostly white people, “it could lead to mistakes, unknowingly,” said Misa Graff, an associate professor in epidemiology at the University of North Carolina and a genetics researcher.

In fact, that’s already happening. In 2016, for example, research found that some Black patients had been misdiagnosed with a potentially fatal heart condition because they’d tested positive for a genetic variant thought to be harmful. That variant is much more common among Black Americans than white Americans, the research found, and is considered likely harmless among Black people. Misclassifications can be avoided if “even modest numbers of people from diverse populations are included in sequence databases,” the authors wrote.

The genetics research project in Charleston requires participants to complete an online consent form and submit a saliva sample, either in person at a designated lab or collection event or by mail. They are not paid to participate, but they do receive a report outlining their DNA results. Those who test positive for a genetic marker linked to cancer or high cholesterol are offered a virtual appointment with a genetics counselor free of charge.

Some research projects require more time from their volunteers, which can skew the pool of participants, Graff said, because not everyone has the luxury of free time. “We need to be even more creative in how we obtain people to help contribute to studies,” she said.

Moultrie said he recently asked project leaders to reach out to African American media outlets throughout the Palmetto State to explain how the genetics research project works and to encourage Black people to participate. He also suggested that when researchers talk to Black community leaders, such as church pastors, they ought to persuade those leaders to enroll in the study instead of simply passing the message along to their congregations.

“We have new ideas. We have ways we can do this,” Moultrie said. “We’ll get there.”

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Other ongoing efforts are already improving diversity in genetics research. At the National Institutes of Health, a program called “All of Us” aims to analyze the DNA of more than 1 million people across the country to build a diverse health database. So far, that program has enrolled more than 790,000 participants. Of these, more than 560,000 have provided DNA samples and about 45% identify as being part of a racial or ethnic minority group.

“Diversity is so important,” said Karriem Watson, chief engagement officer for the All of Us research program. “When you think about groups that carry the greatest burden of disease, we know that those groups are often from minoritized populations.”

Diverse participation in All of Us hasn’t come about by accident. NIH researchers strategically partnered with community health centers, faith-based groups, and Black fraternities and sororities to recruit people who have been historically underrepresented in biomedical research.

In South Carolina, for example, the NIH works with Cooperative Health, a network of federally qualified health centers near the state capital that serve many patients who are uninsured and Black, to recruit patients for All of Us. Eric Schlueter, chief medical officer of Cooperative Health, said the partnership works because their patients trust them.

“We have a strong history of being integrated into the community. Many of our employees grew up and still live in the same communities that we serve,” Schlueter said. “That is what is part of our secret sauce.”

So far, Cooperative Health has enrolled almost 3,000 people in the research program, about 70% of whom are Black.

“Our patients are just like other patients,” Schlueter said. “They want to be able to provide an opportunity for their children and their children’s children to have better health, and they realize this is an opportunity to do that.”

Theoretically, researchers at the NIH and the Medical University of South Carolina may be trying to recruit some of the same people for their separate genetics studies, although nothing would prevent a patient from participating in both efforts.

The researchers in Charleston acknowledge they still have work to do. To date, In Our DNA SC has recruited about half of the 100,000 people it hopes for, and of those, about three-quarters have submitted DNA samples.

Caitlin Allen, a program investigator and a public health researcher at the medical university, acknowledged that some of the program’s tactics haven’t succeeded in recruiting many Black participants.

For example, some patients scheduled to see providers at the Medical University of South Carolina receive an electronic message through their patient portal before an appointment, which includes information about participating in the research project. But studies show that racial and ethnic minorities are less likely to engage with their electronic health records than white patients, Allen said.

“We see low uptake” with that strategy, she said, because many of the people researchers are trying to engage likely aren’t receiving the message.

The study involves four research coordinators trained to take DNA samples, but there’s a limit to how many people they can talk to face-to-face. “We’re not necessarily able to go into every single room,” Allen said.

That said, in-person community events seem to work well for enrolling diverse participants. In March, In Our DNA SC research coordinators collected more than 30 DNA samples at a bicentennial event in Orangeburg, South Carolina, where more than 60% of residents identify as Black. Between the first and second year of the research project, Allen said, In Our DNA SC doubled the number of these community events that research coordinators attended.

“I would love to see it ramp up even more,” she said.

(KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.)

©2024 KFF Health News. Distributed by Tribune Content Agency, LLC.