Connect with us

Health

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

Published

on

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.

Advertisement

“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.

Advertisement

“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.

Advertisement

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.

Advertisement

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.

Advertisement

Health

Another state bans ‘gas station heroin’ as officials warn of deadly risks

Published

on

Another state bans ‘gas station heroin’ as officials warn of deadly risks

NEWYou can now listen to Fox News articles!

Top stories

→ ‘Gas station heroin’ banned in another state amid nationwide crackdowns

→ New COVID variant spreads across US as CDC raises concerns

→ The real reasons you’re still exhausted after 8 hours of sleep

FDA Commissioner Martin Makary says tianeptine poses a “dangerous and growing health trend.” (Markus Scholz/picture alliance via Getty Images)

Advertisement

Conversation-starters

→ March Madness sparks surprising surge in men’s sexual procedure

→ Cannabis benefits called into question in major study

→ ‘Call a Boomer’ payphones help cure loneliness across generations

Along a bustling sidewalk in Boston, a bright yellow payphone invites folks to “Call a Boomer.” (Matter Neuroscience)

Food for thought 

→ Eating meat tied to lower dementia risk, study suggests

Advertisement

→ Stomach issues might have nothing to do with eating habits

→ Why your sugar cravings won’t go away, even after cutting sweets

CLICK HERE FOR MORE HEALTH STORIES

Continue Reading

Health

Dementia risk signals could lie in simple blood pressure readings, researchers say

Published

on

Dementia risk signals could lie in simple blood pressure readings, researchers say

NEWYou can now listen to Fox News articles!

Simple measurements taken during routine blood pressure checks could predict dementia risk years before symptoms appear.

That’s according to new research presented this week at the American College of Cardiology’s Annual Scientific Session in Louisiana.

The findings draw on two studies led by researchers at Georgetown University, which suggest that monitoring how blood vessels age and stiffen over time can provide a window into future cognitive health.

LURKING DEMENTIA RISK EXPOSED BY BREAKTHROUGH TEST 25 YEARS BEFORE SYMPTOMS

Advertisement

Data shows rates of dementia and aging-related cognitive decline are expected to increase as populations age, and half of U.S. adults have high blood pressure (hypertension).

Scientists believe that efforts to better address hypertension, a key contributor to heart disease and a risk factor for dementia, could affect both cardiac and brain health.

Data shows rates of dementia and aging-related cognitive decline are expected to increase as populations age. Meanwhile, half of U.S. adults have high blood pressure. (iStock)

“Blood pressure management isn’t just about preventing heart attacks and strokes; it may also be one of the most actionable strategies for preserving cognitive health,” Dr. Newton Nyirenda, the study’s lead author and an epidemiologist at Georgetown University in Washington, said in a press release.

The research focused on two metrics, the pulse pressure-heart rate index and estimated pulse wave velocity. Both were calculated using data collected during standard doctor visits, such as heart rate, age and blood pressure.

Advertisement

“Blood pressure management isn’t just about preventing heart attacks and strokes; it may also be one of the most actionable strategies for preserving cognitive health.”

Researchers examined five years of data patterns for more than 8,500 people in the SPRINT trial, a large study of adults 50 years and older with hypertension. In the follow-up, 323 of the participants developed probable dementia.

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

In one study, the team found the pulse pressure-heart rate index was a strong independent predictor of dementia risk in adults over 50. For participants under 65, every one-unit increase was associated with a 76% higher risk of developing dementia.

For participants under 65, an increase in the pulse pressure-heart rate index was associated with a 76% higher risk of developing dementia. (iStock)

Advertisement

The second study found that adults with consistently elevated or rapidly increasing pulse wave velocity were more likely to develop dementia than those with stable velocity, even after accounting for factors like smoking, gender and cardiovascular history.

CLICK HERE FOR MORE HEALTH STORIES

“Our findings suggest that vascular aging patterns may provide meaningful insight into future dementia risk,” said Nyirenda. “This reinforces the idea that managing vascular health earlier in life may influence long-term brain health.”

CLICK HERE TO SIGN UP FOR OUR HEALTH NEWSLETTER

The team emphasized that clinicians should tailor risk assessments and treatment strategies to the individual.

Advertisement

Further studies are needed to confirm these parameters and determine whether changing vascular aging trajectories reduces dementia risk. (iStock)

“You don’t want to wait until a patient starts manifesting cognitive decline before you act,” said senior study author Sula Mazimba, an associate professor at the University of Virginia.

CLICK HERE TO DOWNLOAD THE FOX NEWS APP

Researchers noted the study could not establish causation. Other limitations included the fact that participants already had hypertension and elevated cardiovascular risk, meaning the findings may not apply to people without those conditions.

TEST YOURSELF WITH OUR LATEST LIFESTYLE QUIZ

Advertisement

Further studies are needed to confirm these findings and to determine whether improving blood vessel health over time could reduce dementia risk.

Continue Reading

Health

Everything You Need To Know About Zepbound for Weight Loss, Including Costs

Published

on

Everything You Need To Know About Zepbound for Weight Loss, Including Costs


Advertisement





What Is Zepbound? Weight-Loss Benefits, Costs and Dosage




















Advertisement





Advertisement


Use left and right arrow keys to navigate between menu items.


Use escape to exit the menu.

Advertisement

Continue Reading

Trending