23andMe is best known for selling DNA test kits, but the company’s real value lies in the data of its 5 million customers. The bigger its genetic database, the more insights 23andMe can glean from DNA. That, in turn, means the more it can tell customers about their ancestry and health and the more valuable the data it shares with academic scientists and sells to pharmaceutical companies for research. About 80 percent of 23andMe customers choose to participate in such research.
As impressive as 23andMe’s genetic database is, it still has noticeable gaps—especially among Africans, Middle Easterners, Central Asians, Southeast Asians, and indigenous Americans. Almost any group that is not European, basically. In the scientific literature, in fact, nearly 80 percent of the people who have participated in studies of associations between genes and diseases are of European descent.
That is why 23andMe has recently launched a number of initiatives to add underrepresented groups to its database. The latest is the Populations Collaborations Program, which allows U.S.-based scientists already studying underrepresented groups to apply for free spit kits and DNA analysis. In return, 23andMe gets to add the DNA to its database. The company has had one-off collaborations with researchers in Sierra Leone, the Democratic Republic of Congo, and Tanzania, but the new program sets up a formal application process.
Earlier this year, 23andMe also announced the Global Genetics Project to give free tests to people who can trace all four grandparents to one of 61 underrepresented countries. That, in turn, is an expansion of the African Genetics Project, which did the same for certain African countries, specifically chosen for being areas from where slaves and recent immigrants to the United States came.
Africa is also of particular interest to many academic researchers. The continent is famously the cradle of humanity, and it holds more genetic diversity than any other. But this interest has also caused a backlash among African scientists, who feel left behind as American and European scientists reap the benefit of the work. Last week, a consortium of heredity and health researchers called the H3Africa Initiative released ethical guidelines to counter “helicopter” research by foreign scientists. Collecting DNA for not just academic but commercial reasons, as 23andMe would like to do, could make ethics even tricker.
When I sent the description of 23andMe’s Populations Collaborations Program to Jantina de Vries, a bioethicist at University of Cape Town who coauthored the H3Africa guidelines, she flipped the scenario around: “Imagine an African company gets African researchers to collect 1,000 DNA samples of Americans just because they want to. People would not like that at all.”
Joanna Mountain, the senior director of research at 23andMe, has done fieldwork in Africa before, and says she understands the challenges of gaining trust for this kind of work. Before joining 23andMe, she was a professor at Stanford, and she has collected DNA samples among hunter-gatherers in Tanzania. It takes a lot of time and effort. That’s why 23andMe wants to collaborate with researchers with existing relationships. “They know the ethnic groups and the languages. They know all the background, which is really critical,” says Mountain. She says 23andMe considered sending their own teams out to collect DNA, but they quickly realized the company doesn’t have the right expertise.
De Vries says the key question is what’s in it for the people giving up their DNA. 23andMe does plan to evaluate applications based on how people sampled can benefit from the research. For example, Mountain says, could the research ultimately reveal insights about a group’s history or genetic predispositions to disease? And more directly, the company may offer a grant of up to $10,000 to cover fieldwork, which could go toward projects helping the local community by funding education or infrastructure or even food.
In one of its previous collaborations, 23andMe provided free DNA analysis for Nathan Nunn, an economist at Harvard who is studying the Kuba Kingdom in what is the present-day Democratic Republic of Congo. His research group sponsored research assistants to come to the United States to continue their education. They have also given lectures about their research to the local community in an effort to give something back to the people who have participated. “We are very cognizant of that,” he says.
George Perry, an evolutionary biologist at Pennsylvania State University who has a number of research projects in Africa, says 23andMe’s program is “potentially exciting and potentially mutually beneficial.” He would want to nail down exactly how 23andMe plans to use the data to address concerns about “bioprospecting.” And explaining all of this to research participants—how DNA works, why an American company wants to collect their DNA—to get truly informed consent could take multiple visits over a few years, he says.
23andMe has been very successful in building its DNA database by convincing wealthy customers to get tested for one or two hundred bucks. How it will convince people on another continent who otherwise have no interest in DNA is a different challenge altogether.