Health

Drug Company to Share Revenues With Indigenous People Who Donated Their Genes

Published

1 year ago

January 7, 2025

Drug Company to Share Revenues With Indigenous People Who Donated Their Genes

When Stephane Castel first met with a group of Māori people and other Pacific Islanders in New Zealand to talk about his drug company’s plans for genetic research, locals worried he might be seeking to profit from the genes of community members without much thought to them.

Instead, Dr. Castel and his colleagues explained, they were aiming to strike an unconventional bargain: In exchange for entrusting them with their genetic heritage, participating communities would receive a share of the company’s revenues. Dr. Castel also vowed not to patent any genes — as many other companies had done — but rather the drugs his company developed from the partnership.

“A lot of people told us this was a crazy idea, and it wouldn’t work,” Dr. Castel said. But five years after that first conversation during an Indigenous health research conference in March 2019, Dr. Castel’s gambit is beginning to pay off for both parties.

On Tuesday, his company, Variant Bio, based in Seattle, announced a $50 million collaboration with the drugmaker Novo Nordisk to develop drugs for metabolic disorders, including diabetes and obesity, using data collected from Indigenous populations. Variant Bio will distribute a portion of those funds to the communities it worked with in nine countries or territories, including the Māori, and will seek to make any medicines that result from its work available to those communities at an affordable price.

Experts on Indigenous genetics said the deal was a positive step for a field that has been plagued by accusations of exploitation and a gulf of mistrust.

“In the past, researchers would enter Indigenous communities with empty promises,” said Krystal Tsosie, a geneticist and bioethicist at Arizona State University who runs a nonprofit genetic repository for Indigenous people. “Variant Bio is the only company, to the best of my knowledge, that has explicitly talked about benefit-sharing as part of their mission.”

The concept for Variant Bio was hatched in a Manhattan bar in August 2018 over drinks between Dr. Castel and Kaja Wasik, who had become friends during their graduate studies in genetics at Cold Spring Harbor Laboratory on Long Island.

Though their laboratory research kept them under the glare of fluorescent lights, they shared a zest for international travel, which they indulged during backpacking trips together in Peru and Chile. They dreamed of building a company that could get them to remote places.

Stephane Castel on a trip to New Zealand’s North Island in 2019.Credit…Kaja Wasik

At the time, drugmakers were establishing partnerships with biological repositories such as UK Biobank, which contains biological samples and health records from a half-million people living in Britain, in order to hunt for associations between genes and disease.

But these databases are primarily made up of genes from people of European descent.

“What’s the value of sequencing the 500,001st British person?” Dr. Castel said. “There are only so many insights to find by studying the same group of people.”

He and Dr. Wasik were more enthusiastic about recent findings from underrepresented groups, such as the discovery of novel gene variants affecting metabolism that were first identified in Inuit populations in Greenland.

Such variants may be more common, and consequently easier to identify, in historically isolated populations because they confer some functional benefit to people with a certain diet or lifestyle, or simply because of chance events in their history. Yet they can also serve as promising drug targets that will help a wider swath of the global population.

With $16 million in seed funding from Lux Capital, a venture capital firm in New York City, Dr. Castel and Dr. Wasik quit their jobs and began working full-time for their startup. Dr. Wasik hopped across eight countries in Africa, Asia, Europe and the Pacific in the company’s first year, while Dr. Castel, for the most part, dutifully built their software platform from his base in the United States.

They enlisted ethical advisers to develop a benefit-sharing model and went on a listening tour. They knew from the get-go they would have to tread carefully.

In 2007, a member of the Karitiana tribe in Brazil told The New York Times that his community had been “duped, lied to and exploited” by scientists who had collected their blood and DNA, which was later sold for $85 per sample. The tribe members, who said they had been wooed with promises of medicines, received nothing.

Ten years later, there was still no consensus about the optimal way to conduct such work. To protect against so-called biopiracy, many countries ratified the Nagoya Protocol under the United Nations Convention on Biological Diversity, which requires the “equitable sharing of benefits” emerging from genetic resources. But the protocol excluded human genomic information.

During Dr. Castel’s and Dr. Wasik’s trip to New Zealand in 2019, the researchers and community members were troubled by a previous attempt by U.S. researchers to patent a test for obesity risk based on genetic studies carried out in Samoa. The researchers’ universities did not include their Samoan collaborators on their patent application as co-inventors, nor did they have formal benefit-sharing agreements in place with local institutions. (That patent application has since been abandoned, and the researchers said they always intended to share benefits with their partners.)

One of Variant’s first advisers was Keolu Fox, an outspoken geneticist at the University of California, San Diego, who had been harshly critical of the Samoan research.

“This is an extension of all these other forms of colonialism,” said Dr. Fox, who is Native Hawaiian and joined Dr. Wasik and Dr. Castel on their New Zealand outreach trip. He believed that Variant could lead by example.

In the company’s benefit-sharing program, up to 10 percent of a project’s budget goes toward community programs, typically by funding local organizations.

For example, as part of its New Zealand-based study into the genetic causes of kidney disease and other metabolic disorders in the Māori and other people of Pacific ancestry, the company spent $100,000 to fund several local health organizations along with scholarships and scientific conferences for Indigenous people.

“Before Variant came along, we didn’t do that because we couldn’t afford to do so,” said Tony Merriman, a gout expert at the University of Alabama at Birmingham who has collaborated with the company on two projects in the Pacific region.

Dr. Merriman said that he also appreciated that the company ensured that its findings were shared with the community. In French Polynesia, the company’s research has encouraged increased access to a gout medication after concluding that the local population did not have an elevated risk of a fatal drug reaction that had been observed in certain Asian populations.

The new Novo Nordisk deal kicks off a second, longer-term phase of the benefit-sharing program. Communities will share in a 4 percent slice of Variant’s revenue and, if the company is ever sold or goes public, 4 percent of its equity. That percentage is comparable to the royalties that universities receive for licenses to their patents.

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Health

Melissa Joan Hart, 49, Opens up About Weight Loss in Perimenopause

Published

11 hours ago

March 3, 2026

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Melissa Joan Hart, 49, Opens up About Weight Loss in Perimenopause

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Health

Alzheimer’s prevention breakthrough found in decades-old seizure drug

Published

12 hours ago

March 3, 2026

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Alzheimer’s prevention breakthrough found in decades-old seizure drug

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A drug that has long been used to treat seizures has shown promise as a potential means of Alzheimer’s prevention, a new study suggests.

The anti-seizure medication, levetiracetam, was first approved by the FDA in November 1999 under the brand name Keppra as a therapy for partial-onset seizures in adults. The approval has since expanded to include children and other types of seizures.

Northwestern University researchers recently found that levetiracetam prevented the formation of toxic amyloid beta peptides, which are small protein fragments in the brain that are commonly seen in Alzheimer’s patients.

The medication was found to prevent the formation of amyloid-beta 42 in both animal models and cultured human neurons, according to the study findings, which were published in Science Translational Medicine.

The effect was also seen in post-mortem human brain tissue obtained from individuals with Down syndrome, who are at high risk for Alzheimer’s disease.

The medication was found to prevent the formation of amyloid-beta 42 in both animal models and cultured human neurons. (iStock)

“While many of the Alzheimer’s drugs currently on the market, such as lecanemab and donanemab, are approved to clear existing amyloid plaques, we’ve identified this mechanism that prevents the production of the amyloid‑beta 42 peptides and amyloid plaques,” said corresponding author Jeffrey Savas, associate professor of behavioral neurology at Northwestern University Feinberg School of Medicine, in a press release.

“Our new results uncovered new biology while also opening doors for new drug targets.”

HIDDEN BRAIN CONDITION MAY QUADRUPLE DEMENTIA RISK IN OLDER ADULTS, STUDY SUGGESTS

The brain is better able to avoid the pathway that produces toxic amyloid‑beta 42 proteins in younger years, but the aging process gradually weakens that ability, Savas noted.

“This is not a statement of disease; this is just a part of aging. But in brains developing Alzheimer’s, too many neurons go astray, and that’s when you get amyloid-beta 42 production,” he said.

The effect was also seen in post-mortem human brain tissue obtained from individuals with Down syndrome, who are at high risk for Alzheimer’s disease. (iStock)

That then leads to tau (“tangles”) — abnormal clumps of protein inside brain neurons — which can kill brain cells, trigger neuroinflammation and lead to dementia.

In order for levetiracetam to function as an Alzheimer’s blocker, high-risk patients would have to start taking it “very, very early,” Savas said — up to 20 years before elevated amyloid-beta 42 levels would be detected.

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“You couldn’t take this when you already have dementia, because the brain has already undergone a number of irreversible changes and a lot of cell death,” the researcher noted.

The researchers also did a deep dive into previous human clinical data to determine whether Alzheimer’s patients who were taking the anti-seizure drug had slower cognitive decline. They reported that the patients in that category had a “significant delay” in the span from cognitive decline to death compared to those not taking the drug.

“This analysis supports the positive effect of levetiracetam to slow the progression of Alzheimer’s pathology,” the researcher said. (iStock)

“Although the magnitude of change was small (on the scale of a few years), this analysis supports the positive effect of levetiracetam to slow the progression of Alzheimer’s pathology,” Savas said.

Looking ahead, the research team aims to find people who have genetic forms of Alzheimer’s to participate in testing, Savas said.

Limitations and caveats

The study had several limitations, including that it relied on animal models and cultured cells, with no human trials conducted.

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Because the study was observational in nature, it can’t prove that the medication caused the prevention of the toxic brain proteins, the researchers acknowledged.

Savas noted that levetiracetam “is not perfect,” cautioning that it breaks down in the body very quickly.

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The team is currently working to create a “better version” that would last longer in the body and “better target the mechanism that prevents the production of the plaques.”

“You couldn’t take this when you already have dementia, because the brain has already undergone a number of irreversible changes and a lot of cell death.”

The medication’s common documented side effects include drowsiness, weakness, dizziness, irritability, headache, loss of appetite and nasal congestion.

It has also been linked to potential mood and behavior changes, including anxiety, depression, agitation and aggression, according to the prescribing information. In rare cases, it could lead to severe allergic reactions, skin reactions, blood disorders and suicidal ideation.

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Funding for the study was provided by the National Institutes of Health and the Cure Alzheimer’s Fund.

Fox News Digital reached out to the drug manufacturer and the researchers for comment.

Melissa Rudy is senior health editor and a member of the lifestyle team at Fox News Digital. Story tips can be sent to melissa.rudy@fox.com.

Health

Seniors over 80 who eat specific diet may be less likely to reach 100 years old

Published

1 day ago

March 3, 2026

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Seniors over 80 who eat specific diet may be less likely to reach 100 years old

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Older adults who avoid meat in their golden years may be less likely to reach age 100 than their meat-eating counterparts, new research suggests.

Researchers tracked more than 5,000 adults aged 80 or older who were enrolled in the Chinese Longitudinal Healthy Longevity Survey.

Between 1998 and 2018, data showed that those who did not eat meat were less likely to reach their 100th birthday than those who consumed animal products regularly.

The findings seem to contradict previous studies that have linked vegetarianism and plant-based diets to lower risks of heart disease, stroke, diabetes and obesity.

Most evidence supporting the benefits of plant-based diets comes from studies tracking younger populations, the researchers noted.

The findings contrast with previous research praising plant-based diets for their positive influence on heart health. (iStock)

The study, published in The American Journal of Clinical Nutrition, points to losses in muscle mass and bone density with age, shifts that can increase the risk of malnutrition and frailty in the “oldest old.”

As people enter their 80s and 90s, the nutritional priority often shifts from preventing long-term chronic diseases to maintaining day-to-day physical function, experts say.

HOW MUCH RED MEAT IS TOO MUCH? EXPERTS WEIGH IN ON FOOD PYRAMID UPDATES

“The headline ‘vegetarians over 80 less likely to reach 100’ sounds surprising, because it contrasts with decades of data linking plant‑forward diets to lower chronic disease risk earlier in life,” Erin Palinski-Wade, a New Jersey-based registered dietitian, told Fox News Digital.

“However, once you see that this research is limited to adults over the age of 80 who are also underweight — and that this link disappears with the consumption of eggs, dairy and fish — the results are less surprising.”

While diets earlier in life tend to emphasize avoiding long-term disease, older age necessitates nutrients and weight maintenance, experts say. (iStock)

In those over 80, restricting animal proteins may be less likely to promote longevity, according to Palinski-Wade, who was not involved in the study.

Eliminating all animal protein — particularly in a population that may already experience diminished hunger cues — can make it more difficult to meet adequate protein needs, potentially increasing the risk of nutrient deficiencies, the nutritionist said.

ALZHEIMER’S SYMPTOMS COULD BE PREDICTED YEARS IN ADVANCE THROUGH ONE SIMPLE TEST

In addition to a higher tendency to be underweight, older populations also face a greater risk of bone fractures due to lower calcium and protein intake.

Potential limitations

The lower rate of vegetarians reaching 100 was only observed in participants identified as underweight, the researchers noted. No such association was found in people who maintained a healthy weight.

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Because being underweight is already linked to greater frailty and mortality risk, the researchers noted that body weight may partly explain the findings, making it difficult to determine whether diet itself played a direct role.

Those incorporating animal-sourced products other than meat were just as likely to live to 100. (iStock)

Additionally, the shortened lifespans were not found in people who continued to eat non-meat animal products, such as fish, dairy and eggs.

Older adults with these more flexible diets were just as likely to live to 100 as those eating meat, as these foods may provide the nutrients necessary for maintaining muscle and bone health, the researchers noted.

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“This is an observational study, so it can only show associations, and does not prove that avoiding meat directly reduces the odds of reaching 100,” Palinski-Wade added.

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The researchers suggested that including small amounts of animal-sourced foods could help older seniors maintain essential nutrients and avoid the muscle loss often seen in those who stick strictly to plants.

Palinski-Wade offered some guidance for those looking to optimize nutrition later in life.

“For adults in their 80s and beyond, especially anyone losing weight or muscle, the priority should be maintaining a healthy weight and meeting protein and micronutrient needs — even if that means adding or increasing fish, eggs, dairy or well‑planned, fortified plant proteins and supplements.”

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Strict vegan or very low‑protein patterns at that age should be carefully monitored by a dietitian or clinician, with attention to B12, vitamin D, calcium and total protein, according to Palinski-Wade.

“Younger and healthier adults can still confidently use plant‑forward or vegetarian patterns to lower long‑term chronic disease risk,” she added.

Khloe Quill is a lifestyle production assistant with Fox News Digital. She and the lifestyle team cover a range of story topics including food and drink, travel, and health.