WHEN Stephane Castel first met with a group of Maori people and other Pacific Islanders in New Zealand to discuss his biotech company’s plans for genetic research, the reception was cautious.
Community members feared a repeat of past exploitations where researchers profited from their genetic material without regard for their welfare.
Instead, Castel and his team at Variant Bio proposed a novel approach: a direct partnership where communities would share in the financial benefits derived from their genetic heritage.
He assured them there would be no patents on genes – a contentious practice by some companies in the past – but rather on the drugs developed through their collaboration.
“A lot of people told us this was a crazy idea, and it wouldn’t work,” Castel recalled. Five years on, that bold vision is starting to bear fruit.
On Jan 7, Variant Bio, based in Seattle, announced a US$50mil partnership with pharmaceutical giant Novo Nordisk.
The collaboration aims to develop treatments for metabolic disorders, including diabetes and obesity, using genetic data collected from indigenous populations. A portion of the funds will go directly to the communities involved, including the Maori, and Variant Bio has pledged to provide any resulting medications at an affordable price for these groups.
Ethical collaboration
Experts in indigenous genetics have praised the deal as a groundbreaking step in a field often plagued by mistrust and allegations of exploitation.
“In the past, researchers would enter indigenous communities with empty promises,” said Krystal Tsosie, a geneticist and bioethicist at Arizona State University.
“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 company’s journey began in 2018, when Castel and co-founder Kaja Wasik conceptualised Variant Bio during a conversation in a Manhattan bar.
Both geneticists, they envisioned a company that could explore under-represented genetic populations, whose unique variants might hold the key to revolutionary medical treatments.
At the time, many drug companies relied heavily on data from repositories like the UK Biobank, which predominantly features individuals of European descent.
Castel and Wasik believed there was greater potential in studying historically isolated populations, such as the Inuit of Greenland, whose genetic variants have revealed insights into metabolism.
“What’s the value of sequencing the 500,001st British person?” Castel asked.
“There are only so many insights to find by studying the same group of people.”
Building bridges, not barriers
To avoid the pitfalls of past research, Variant Bio embarked on a listening tour, engaging ethical advisers and local communities from the outset.
Castel and Wasik were determined to tread carefully, mindful of controversies like the exploitation of the Karitiana tribe in Brazil, whose DNA was sold without consent.
One of their first advisers, Keolu Fox, a Native Hawaiian geneticist, accompanied them to New Zealand in 2019.
Fox has been vocal about the colonial undertones of genetic research and believes Variant’s benefit-sharing model could set a new standard.
“This is an extension of all these other forms of colonialism,” Fox said. “Variant can lead by example.”
The company commits up to 10% of a project’s budget to local initiatives, such as health programmes and scholarships.
In New Zealand, for instance, it invested US$100,000 in community projects during its study of kidney disease and metabolic disorders in Maori and Pacific Islander populations.
Variant’s findings are also shared with participating communities. In French Polynesia, its research helped debunk concerns about a fatal drug reaction risk among locals, enabling better access to gout medication.
Sharing the rewards
The Novo Nordisk partnership marks a brand new phase for Variant’s benefit-sharing programme.
Communities will now share in 4% of the company’s revenue and, if Variant is ever sold or goes public, 4% of its equity – a figure comparable to royalties universities earn from patents.
“Before Variant came along, we couldn’t afford to do this,” said Tony Merriman, a gout expert collaborating with the company. “Now, communities see tangible benefits from the work.”
By prioritising transparency and equity, Variant Bio is redefining what it means to conduct ethical genetic research.
For indigenous communities long wary of exploitation, the company’s approach offers a beacon of hope – and a model for others to follow. — ©2025 The New York Times Company
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