Over the past few weeks, 23andMe and other genetic testing companies have made headlines for releasing candid statements acknowledging that their field and their products are too white. It’s a problem with which geneticist Tshaka Cunningham is all too familiar.
As executive director of the nonprofit Faith Based Genetic Research Institute, Cunningham has traveled widely to speak at Black churches about the value of genetic research. And as co-founder and chief scientific officer of a genetics startup called TruGenomix, he’s working to recruit more diverse cohorts to build a genetic test for gauging risk of developing PTSD.
Cunningham recently called in to STAT’s podcast, The Readout LOUD, to discuss genetics and racial inequity — and what needs to be done to make the field actually reflect the world’s diversity.
The transcript of the conversation has been lightly edited for clarity.
So, Tshaka, what do you make of the reckoning that we’ve seen in the past couple weeks from 23andMe and other genetics companies on these issues?
You know, I think it’s actually a really good thing. I was glad to see it from the highest levels from these companies — acknowledging an issue that many of us in the research community have known about for quite a long time, which is this lack of representation of diverse genomes in all of our studies and products. I’m glad it’s starting to get deeper attention because I think it is a key issue that’s going to impact the effectiveness of all of these tools over time.
I’m looking forward to seeing some positive things that they will do to address it. So, you know, the first step is admitting you have a problem and then you go through the steps to rehabilitate. I’m hoping that some positive things will come out of this.
What kinds of questions about genetics do you hear from the communities you speak with?
All kinds of questions. And first of all, I say, you know, the work that we’re doing with the Faith Based Genetic Research Institute is very unique in that we are bringing together individuals from the faith communities with scientists who are also people of color, and one of our guiding principles in the work that we do in the community is called the honest broker philosophy. That is, those of us who are imparting the information to the community are also from the community. And what we found is that it really helps us establish a better bond of trust for folks to be able to receive the information.
Some of the questions that we get when we talk about the value and the benefits of genetic research is — the first questions are, you know, are they going to use it to hurt me? That’s the first question we get a lot from African American participants. And, you know, what will they do with the information? There’s a fair bit of distrust out there. And some of it is quite warranted from past transgressions of the medical establishment on the African American community. But once you sort of talk through those issues with folks and really kind of allow them to see some of the potential benefits, then you start getting a high level of interest.
So let’s say 23andMe, for example, or one of the large companies, were to call you and ask for advice on what to do to make their products less Eurocentric and more inclusive. What would you tell them?
Start by making sure that your team, your executive team specifically, is representative of the community. … A lot of companies sort of say, well, we can’t find them. Any company needing to find a talented minority geneticist — give me a call. I’ve got a long list.
The second step would be to really use some of your resources to sponsor more research in this area. I mean, part of the challenge is also a financial and economic challenge. When you think about the economic disparities that have existed in America based on racial lines — you know, the average African American has seven times less wealth than the average Caucasian. So they might not have even a hundred bucks to spend on something like genetic testing that could benefit them.
And then there’s also the messaging. I think to the extent that these companies could help organizations like ours, the Faith Based Genetic Research Institute, other academic institutions, with messaging about the importance or the potential benefits of this, that would be great.
Now, I know that’s a fine line that they have to walk because, you know, you don’t want to seem coercive. But at the same time, I think trying to really do authentic outreach to the community would start with having more of your employees be from the community and then having a dedicated effort of that kind of outreach within your operation.
One of the more controversial questions in this conversation is around compensation. So what do you think? Do you think that 23andMe should pay people in the Black community and other underrepresented populations for their data?
I believe anybody that contributes their data should have the opportunity to get paid for it if it’s used. I do not believe in coercing someone to contribute their data with payment. But if I’m an individual who has contributed and then you go and use my my data … let’s say a pharma company buys access to my data and I don’t see any benefit from it, then that feels a bit un-American and I just don’t feel like it’s fair. But that’s my personal opinion.
So let’s talk a little bit about polygenic risk score tests, which really encapsulate the diversity problems in genetics. So, for readers who are unfamiliar with them, these are tests that gather multiple genetic variants together and use them to predict someone’s chances of developing a disease. So far, many commercial polygenic risk score tests have come off warnings that they’re not very accurate or are even useless in people who are not of European ancestry. But your startup, TruGenomix, is working on a polygenic risk score test to try to gauge risk for developing PTSD. And you’re trying to build the test using more diverse data. Tell us about your approach.
I’ve recognized the importance of diversity in your datasets. From my earliest days, when I was at the Department of Veterans Affairs, we had a large genomics project called the Million Veteran Program. And part of my contribution to that project was to make sure that minority veterans participated. And so we actually went to great effort to ensure that. And that project has done very well — to the credit of the VA, to recruit minority veterans. So that data set is going to provide some rich understanding, or has that potential to provide rich understanding, in polygenic risk for minority communities.
I took some of what I learned there — from having to really take the time to do the outreach to the communities, to make sure that the end products are representative. I think that is just core to our actual DNA as a company. I think part of that has to do with the fact that we’re one of the very few minority-owned genomics companies in the country right now. This was top of mind for us. We wanted to make sure that whatever products we were putting out, the polygenic risk related to all communities, specifically the African American community, which my founders and I come from. It was just a very important thing for us to do — not only for societal and ethical reasons, but also for scientific integrity reasons, because as a scientist, I don’t believe in putting out products that aren’t probably applicable to all communities.
So why haven’t other makers of polygenic risk score tests taken this more holistic approach?
You know, I can’t speak for them. I mean, I don’t know. That’s a question that I have. I would hope that they take a deeper look at it. Maybe their market calculations were, “OK, the people using genetic tests now tend not to be people of color. And therefore, we don’t need to care about them.” I don’t know. You’ll have to ask them that question.
All I could say is that I hope that all of the companies that are making these kinds of tests really take diversity seriously. I’ve given lectures around diversity and genetics in the past. The majority of the DNA in the world is not of Caucasian origin. It’s actually of Asian origin. And then African and Latino. And then Caucasians are only maybe about 14% of all the DNA out there just based on population. So when you think about it in that respect, if you really want to have a genome that is globally applicable, then you’d really need to focus on its diversity.
Tshaka, thank you for coming on the podcast today.
Great. It’s great being with you all today.
Theresa Gaffney contributed to this report.