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

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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.

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“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.

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“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.

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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.

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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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Alzheimer’s scientists find key to halting brain decline before symptoms

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Alzheimer’s scientists find key to halting brain decline before symptoms

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Scientists may have found a way to stop Alzheimer’s damage before it starts — by “melting” the tiny protein clumps that are the early triggers of the disease.

Alzheimer’s has long been linked to harmful tau protein fibrils that build up in the brain and interfere with cognitive function, but researchers have now discovered soft, small clusters that appear first.

When those early clusters were dissolved, it prevented the toxic fibrils from forming, which could effectively block the disease, according to researchers from Tokyo Metropolitan University.

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Led by Professor Rei Kurita, the scientists used precise X-ray and fluorescence methods in a laboratory setting to find the microscopic “precursors,” which measured only tens of nanometers, according to a press release.

Because the tiny precursors were soft, the researchers were able to dissolve them. As a result, no tau fibrils were formed.

Scientists may have found a way to stop Alzheimer’s damage before it starts — by “melting” the tiny protein clumps that are the early triggers of the disease. (iStock)

These results suggest a shift in how scientists might develop Alzheimer’s disease treatments.

Rather than focusing on breaking apart the final fibril formations, new therapies could target the earlier, reversible precursor stage to prevent harmful structures from forming in the first place, according to the release.

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This strategy could eventually be applied to the research of neurodegenerative diseases like Parkinson’s.

The study did have some limitations, primarily that it involved in-vitro biochemical models and no humans or animals. It’s not known whether similar reversible clusters exist in human brain tissue.

Alzheimer’s has long been linked to harmful tau protein fibrils that build up in the brain and interfere with cognitive function. (iStock)

More research is needed to find out if breaking up these protein clusters is safe and could actually help treat the disease.

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Dr. Marc Siegel, Fox News senior medical analyst, was not involved in the study but shared his reactions to the findings.

“There are three essential components structurally involved in the development of Alzheimer’s disease — beta amyloid proteins, tau proteins and neuroinflammation,” he told Fox News Digital.

“In the future, there will likely be triple therapy — anti-inflammation, anti-beta-amyloid and anti-tau.”

“There are already treatments on the market to target beta amyloid buildup, and now here’s a targeted therapy to dissolve and disrupt tau protein buildup before it forms the dreaded neurofibrillatory tangles.”

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Siegel believes this is “bound to be of clinical value” and will likely be better tolerated than other medications currently on the market.

“In the future, there will likely be triple therapy — anti-inflammation, anti-beta-amyloid and anti-tau,” he predicts.

“This is promising basic research that may turn out to deepen our understanding of the mechanisms underlying the disease, but it is preliminary,” an expert said. (iStock)

Courtney Kloske, Ph.D., director of scientific engagement for the Alzheimer’s Association in Chicago, also reacted to the study in an interview with Fox News Digital.

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“This manuscript focuses on altering the structure of tau, one of the hallmark brain proteins involved in Alzheimer’s, and on exploring approaches that could potentially slow or stop disease development,” said Kloske, who was also not involved in the study.

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“This is promising basic research that may turn out to deepen our understanding of the mechanisms underlying the disease, but it is preliminary, and additional studies are needed to determine how these findings can be translated into human studies.”

Fox News Digital reached out to the researchers for comment.

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I’m a Dietitian—Here’s the Best Snack for Weight Loss After 50

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I’m a Dietitian—Here’s the Best Snack for Weight Loss After 50


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Gut imbalance may be driving America’s food allergy epidemic, experts warn

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Gut imbalance may be driving America’s food allergy epidemic, experts warn

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With over 32 million Americans battling food allergies, health advocates and officials are looking for the root cause — which includes looking into microbiomes.

The Food Allergy Fund (FAF) hosted a forum on Monday in Washington, D.C., with HHS Secretary Robert F. Kennedy, FDA Chief Martin Makary and NIH Director Jay Bhattacharya.

In an interview with Fox News Digital, Makary shared how the function of microbiomes has evolved over time.

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The intestine hosts over a billion different types of bacteria, which normally live in balance, according to Makary.

The doctor added, “but when it’s altered by the modern-day diet and by antibiotics and other exposures … that disequilibrium can cause inflammation, it can cause health problems, and it may be implicated in food allergies.”

“Gut health is central to overall health,” said Makary, pictured at a Nov. 16 forum hosted by the Food Allergy Fund. (Ashley J. DiMella/Fox News Digital)

“Gut health is central to overall health,” Makary emphasized. Some beneficial microbes may be missing in modern populations due to dietary and environmental changes, which could play a role in the rise of food allergies, he added.

Researchers at Siolta Therapeutics are testing this theory. Their oral microbiome therapy, STMC-103H, has shown promising results in a Phase 2 trial involving 238 newborns with a family history of allergies.

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Early data suggests the therapy could reduce the risk of developing food allergies by 77%, indicating that improving gut bacteria early in life could prevent allergies before they start.

Final results are expected in early 2026.

Early data suggests the therapy could reduce the risk of developing food allergies by 77%, indicating that improving gut bacteria early in life could prevent allergies before they start. (iStock)

Ilana Golant, FAF founder and CEO, told Fox News Digital “food allergies may be the canary in the coal mine for a much larger health crisis tied to the microbiome.”

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FAF launched its Food Allergy Fund Microbiome Collective in New York City to further investigate how gut bacteria could help prevent or treat not only allergies, but also autoimmune and neurodegenerative diseases.

“Gut health is central to overall health.”

“Solving allergies could reveal how to prevent and treat a range of diseases — from autoimmune disorders to neurodegeneration — that impact millions of lives,” said Golant.

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Food allergies are widespread, affecting one in 10 adults and one in 13 children, according to FAF. Every three minutes, someone in the U.S. is treated in the emergency room for a severe allergic reaction.

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Peanut allergies are among the most prevalent food allergies in the U.S., with new research showing that early peanut introduction could significantly reduce childhood allergies.

Ilana Golant, FAF founder and CEO (left), chats with HHS Secretary Robert F. Kennedy Jr. in Washington, D.C., at the Food Allergy Fund Forum. (Ashley J. DiMella/Fox News Digital)

Secretary Kennedy observed at the FAF conference that food allergies — particularly involving peanuts — appear to be far more common among children today than when he was growing up.

“When I was a kid, I never met anyone with a peanut allergy,” Kennedy said. “I had 11 siblings and about 71 first cousins, and I didn’t know a single person in my schools or at any of the camps I went to who had one.”

“There may be many causes, or there may be just one — we don’t know yet.”

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One of his sons has severe anaphylactic allergies to peanuts, tree nuts and several other foods, he shared. 

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“By the time he was 2 years old, we’d been to the emergency room about 22 times,” Kennedy said.

“At first, I focused on how we were going to treat it and keep him safe. But my mind quickly went to the bigger question — why is this happening? I have five of my seven children with allergies,” he said.

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“There may be many causes, or there may be just one — we don’t know yet,” Kennedy continued. “But we’re going to study it. We’re going to break that omertà, end the taboo and find out what’s causing it.”

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