Drug company shares revenue with research participants

Variant Bio, a small biotech company based in Seattle, is using genetic information from Indigenous people to develop drugs for obesity and diabetes.

In 2019, Stephane Castel, the CEO struck an unusual bargain with the locals to receive a share of the company’s revenues in exchange for entrusting them with their genetic data and vowed not to patent any genes as many other companies had done, according to a monitored report.

This week, his company, 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 accusations of exploitation and a gulf of mistrust have plagued.

“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 that has explicitly talked about benefit-sharing as part of their mission to the best of my knowledge.”

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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.

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

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

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 four percent of its equity if the company is ever sold or goes public. That percentage is comparable to the royalties that universities receive for licenses to their patents.