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.

Hello, dear readers. I am back after taking a brief sabbatical from my column, a first in 22 years. Several weeks ago, my column featured five areas that highlighted the subject of aging as reflected in digital and print media, podcasts, webinars, research reports and more.  

Here are five more areas that indicate the pervasiveness and relevance of the subject. It’s a bird’s eye overview from just one person’s perspective and is not based on formal analytics. 

Public policy: One example is the Congressional bill entitled Protecting Older Workers Against Age Discrimination Act (POWADA) of 2023. With bipartisan support, this bill is in response to a 2009 Supreme Court ruling that made it more difficult to prove claims of illegal biases under the Age Discrimination in Employment Act. Since 2009, older workers must prove that age is the deciding factor in the employment decision, rather than just one of the factors. This is a higher burden of proof than needed for other types of job discrimination claims. “This bill helps level the playing field for older workers and restores their ability to fight back against age discrimination in the workplace,” wrote Bill Sweeney, AARP senior vice president for government affairs.

Older consumers: In 2022, the 65-and-older demographic accounted for 22 percent of spending in the U.S. economy. This is the highest market share since records began in 1972. This increase has been attributed to older consumers’ health, wealth and perhaps the psychological impact of the pandemic. At the same time, this demographic is considered an underserved market. According to the Boston Consulting Group, mature consumers often are ignored by brand marketing because they are seen as sensitive and reliant on brick-and-mortar stores for their purchases. “Nothing could be further from the truth. Marketers fail to recognize their role as trendsetters” … notes the consulting group. Furthermore, older adults agree and feel they are being ignored because of age stereotypes, according to research by Age of Majority. 

Employment: In 2023, roughly 11 million older adults were working, which is nearly quadruple in size since the mid-1980s according to a Pew study. The fastest-growing age group are workers age 75 and older. Add to that changes in the Social Security System which raised the age at which workers can receive their full retirement benefits from age 65 to 67. Although illegal, age discrimination continues in the workplace. AARP reports that 78 percent of older workers say they have seen or experienced age discrimination in the work environment. That’s the highest level since AARP began tracking this issue in 2003.

Dementia: Alzheimer’s Disease is the most common form of dementia among older adults affecting nearly 7 million. It has no agreed-upon cause or cure and is among the most feared of age-related conditions. Just over 10 percent of those age 65 and older have Alzheimer’s Disease and almost two-thirds are women. According to the Alzheimer’s Association, “By 2050, the number is projected to grow to 12.7 million, barring the development of medical breakthroughs to prevent or cure the disease.” It’s the seventh leading cause of death. 

Intergenerational relationships: “What we’re missing out on when we don’t have intergenerational relationships, personally and collectively” is a headline from the Los Angeles Times (April 11. 2023). It has been acknowledged that age segregation is a century-long trend in retirement communities, nursing homes and classrooms with same-age children. Marc Freedman, co-executive director of CoGenerate, an organization creating a more age-integrated culture, is quoted as saying that such a culture is “vital to solving major social problems.” For that to happen, he notes we need proximity and purpose – to see each other repeatedly and regularly with some common interests and goals. Closer intergenerational relationships is one way to prevent and eradicate ageism. 

Getting older presents challenges and extraordinary opportunities. We are slowly witnessing strategies to match lifespan with health span; for products, services and living conditions to enhance independence, security and dignity and for public policies to guarantee older adults the same rights as any other age group. We are seeing research studies focusing on the prevention and hopefully a cure of Alzheimer’s Disease and programs to enhance intergenerational connections. 

We all are stakeholders. So let us all embrace aging by staying well, keeping informed, and staying connected to loved ones and our communities. And of course, give back in some way. Know every act of kindness counts.

Helen Dennis is a nationally recognized leader on issues of aging and the new retirement with academic, corporate and nonprofit experience. Contact Helen with your questions and comments at Helendenn@gmail.com. Visit Helen at HelenMdennis.com and follow her on facebook.com/SuccessfulAgingCommunity

By Melissa Lambarena | NerdWallet

Using a credit card to make purchases is straightforward, but understanding the ins and outs of how exactly they work can be more complicated.

On the back end, credit card issuers can take certain liberties that impact your cards’ features. If you dig into the fine print, you’ll find that card issuers generally mention they can make certain account decisions at their discretion. There are also unwritten liberties issuers can take, potentially in your favor. For instance, an issuer may be cooperative when you request lower interest rates, a higher credit limit or a switch to a different card entirely.

The more you understand your credit cards, the better you can navigate them.

Here are a few facts about credit cards that are good to know.

1. Some credit card terms can change with little if any warning

You may become accustomed to certain perks, rewards, fees or even interest rates over time, but those features can change — some more quickly than others. You’ll often find language supporting this in a card’s terms and conditions.

For significant changes — like increases to interest rates, fees and the minimum amount due — the card issuer generally must give notice 45 days in advance, according to the Consumer Financial Protection Bureau’s website. But benefits or rewards aren’t considered “significant,” so changes to those can come at any time. (Many issuers will still send an email or written notification as a courtesy to cardholders.)

Variable interest rates change at a quicker pace than other features, as has been the case since the Federal Reserve began hiking interest rates to battle inflation.

“Folks didn’t realize that the rise in the federal interest rate applies to their credit card also,” says Martin Lynch, director of education at Cambridge Credit Counseling, a nonprofit credit counseling agency. “Variable rate cards incorporate those hikes usually within a month or two, so you did see some people experiencing some sticker shock when the minimum payments went up.”

2. Issuers can close an account or cut your credit limit at any time

Even if you’re managing a credit card responsibly, an issuer can still legally close your account if it wants to, according to the CFPB website.

Credit card issuers can also increase or decrease your credit limit at any time.

The issuer must provide an “adverse action notice” when it makes these kinds of unfavorable decisions, the website notes. But they can still catch you off guard.

3. Your creditor may be willing to bend on interest rates

For longtime customers with solid track records, an issuer might be willing to negotiate a lower interest rate. Alternately, a hardship plan (if available) can temporarily lower interest rates if the hardship is because of qualifying circumstances beyond your control.

If you’re having trouble juggling debt, credit card issuers may also be willing to work with you through a nonprofit credit counseling agency’s debt management plan, which can consolidate those debts into one fixed monthly payment if you qualify.

“Our average interest rate right now is about 8%, among all creditors,” Lynch says. “Some are higher, some are lower.”

For comparison, the average rate for credit cards that assessed interest in the last quarter of 2023 was 22.75%, according to Fed data.

4. You might not qualify for a sign-up bonus

Many credit cards offer an upfront pile of cash back, points or miles as an incentive for new cardholders who can meet a specific spending requirement. But if you’ve recently applied for a credit card with the same issuer — even if it’s been more than a year — you might not qualify for the advertised bonus.

As you’re applying for a credit card, it’s important to read the terms carefully to understand whether you’re eligible for such a welcome offer.

5. You can lose a 0% APR

If you have good or excellent credit (credit scores of 690 or higher), you might qualify for a credit card with a 0% introductory APR on purchases, balance transfers or both. But that promotional window may not be guaranteed.

If you pay late, for instance, the issuer could cancel the 0% APR offer and start charging the card’s ongoing variable interest rate instead. Depending on the card, a much higher penalty APR can also apply after missing a payment.

To avoid missing payments, set a reminder or establish an automatic payment schedule.

6. You might be able to upgrade or downgrade your credit card

If a credit card is no longer as valuable to you as it once was, contact the issuer to see whether it’s possible to upgrade or downgrade your credit card to a different option. This is also known as a “product change,” and it may allow you to retain your account number and account history while switching to a card that better suits your needs now.

You might consider downgrading to a different option to avoid an annual fee, for example. An upgrade might get you higher rewards or better perks.

7. The value of your rewards may vary

It’s not really an issue for cash-back credit cards, but if you have a co-branded store card or travel card, be aware that the points or miles that you’re earning may be less valuable for some redemptions than for others.

For example, your miles may be worth a penny or more each when redeemed for travel, but a good bit less than that when you redeem for options like cash back, statement credit or gift cards.

Knowing the true value of your rewards can help you maximize them. You can often get an idea of that value either by logging into your card account and exploring redemption options or by revisiting the card’s terms and conditions.

The article 7 Surprising Facts About Credit Cards originally appeared on NerdWallet.