23andMe and similar companies have faced criticism over a lack of representation of people of color in its genetic databases and leadership, and earlier this month, 23andMe's CEO acknowledged that the company is "part of the problem" when it comes to racial inequities. But geneticists say there are ways companies like 23andMe can address those disparities.
A history of criticism regarding lack of diversity
The genetics field has long been criticized for an underrepresentation of black people in its leadership, databases, and products. In some cases, health experts say the lack of representation has even resulted in products that only produce accurate results for consumers with European ancestry.
For instance, some experts last year raised concerns that 23andMe's diabetes risk assessment—which calculated consumers' polygenic risk scores, or a person's chance of developing a certain disease—was not broadly applicable because the genetic database that the company relies on to determine a person's polygenic risk score was predominantly made up of data from white participants.
The experts said polygenic risk scores are the most accurate when the data used to train algorithms to calculate them involve people from the same ethnic groups. As such, the experts said 23andMe's diabetes risk assessment was inaccurate for individuals of non-European ancestry—and particularly black people, who are diagnosed with diabetes at a higher rate than white people.
At the time, 23andMe said it was working to diversify its database.
23andMe CEO says company is 'part of the problem' of racial inequities
Amid the nation's current focus on racial inequities, 23andMe CEO Anne Wojcicki in a statement acknowledged that the company's genetics products are "euro-centric," and the company is "part of the problem" when it comes to racial inequities.
"I am ashamed to say I do not have a single black employee who is at director level or above," Wojcicki said. "Our product is euro-centric but must expand to be inclusive and equitable. We absolutely have the potential to be better."
According to STAT News, genetics companies and 23andMe competitors Ancestry and Nebula Genomics recently issued similar statements about the exclusivity of their products and the lack of diversity in the genetics field.
How genetics companies can address their diversity problems
In light of the companies' recent acknowledgements, STAT News' Rebecca Robbins spoke to five experts in genetics and health disparities to determine how 23andMe and similar companies can address their lack of diversity. Here are five steps they identified:
1. Hire a racially diverse team of employees and executives
Tshaka Cunningham, a geneticist and co-founder and chief scientific officer of TruGenomix, said having mostly white employees and leaders at a company could cause consumers and potential hires to assume they're not welcome at that business. "How can you foster trust with me as an African American if I don't see any African Americans on your team?" Cunningham asked.
Further, having a diverse group of employees can help companies navigate issues like the one that emerged with 23andMe's polygenic risk score tests, the experts said.
"By the time they get to posting the statement on the website that the polygenic risk score is not going to be of any use to black people but we're still going to take your money for it, there are many other decisions that have been made and plenty of places where that discussion should have been halted to have a deeper conversation and thought about what to do," said Consuelo Wilkins, a physician and VP for health equity at Vanderbilt University Medical Center.
2. Be transparent about consumer data
23andMe customers must opt in to have their data shared for research, and the company says it will never sell people's individual data. These privacy policies are available online, but Robbins writes that, given a lot of communities of color have been lied to by medical researchers in the past, listing the privacy policies online "may not be enough."
"As I go around the country talking to people of color about genomics and encouraging them to participate and get sequenced, the questions I get are: What are they going to do with that information, and how are they going to use it to hurt me? And then why would I give my information so somebody else can make money off of it," Cunningham said.
Ky'Era Actkins, a Ph.D. student who studies human genetics at Meharry Medical College, said companies like 23andMe need to be more transparent with minority communities and "[t]ry to show people the benefits of what the science community is doing in terms of helping different minority populations."
According to Wilkins, 23andMe and similar companies also need to prove that their testing kits can have value for communities of color. "Why would people who are ethnic minorities want to pay for services that they may benefit less from than people of European descent?" Wilkins asked.
To do this, the company needs to explain whether it is working to improve the kits either by expanding its data to include more people of color or by reinterpreting certain genetic variants, Wilkins said.
3. Recruit more people of color to participate in research
To expand and diversify their databases, 23andMe and similar companies should work to recruit people from underrepresented populations for their research studies, the experts said.
According to Robbins, 23andMe has made a few attempts to diversify its data over the last decade. In 2011, for example, 23andMe launched a study of more than 10,000 black Americans, and in 2016 and 2018, the company launched genetics projects aimed at expanding the company's population data to include more from people of color with heritage from countries in Africa, as well as Oceania, Asia, and the Americas.
But these programs have only "made a dent in the problem," according to Robbins. She writes that the individuals recruited through these initiatives represent "only a tiny fraction" of the people in 23andMe's database.
Joyce Tung, VP of research for 23andMe, in a statement to STAT News said 23andMe still "ha[s] a long way to go" when it comes to diversifying its data. "There is no silver bullet to solve this problem, and it will require prioritizing multiple efforts now and into the future in order to ensure that we help everyone benefit from the human genome," Tung said.
4. Consider compensating consumers for their data
Cunningham suggested that 23andMe and similar companies should consider business models that share their revenues with people of color who contribute their DNA as a way to help diversify the companies' databases. "The current model just doesn't work for many folks," he said.
But others disagreed. Nancy Cox, director of the genetics institute at Vanderbilt University Medical Center, cautioned that offering people money for genetic data, especially during America's current economic crisis, could be "judged by an institutional review board … as being coercive."
5. Acknowledge that the problem doesn't end with companies like 23andMe
Genetics science is not overwhelmingly white simply because of companies like 23andMe, Robbins writes. Academic researchers and other organizations, such as drug companies, also have a responsibility to push for more diverse research, the experts said.
For instance, drug companies that purchase genetic data from companies like 23andMe could pay more for diverse datasets, Robert Green, a medical geneticist and physician at Harvard University and Brigham and Women's Hospital, suggested.