Dr. Janina Jeff can tell you just about anything you want to know about genetics testing: How does it work? What can it tell you? How do you spell mitochondria again? But Jeff herself has never taken a DNA test.
“It still sits on my shelf,” she told The Root in a recent interview. A Ph.D. student in human genetics at Vanderbilt at the time (Jeff would eventually become the first African American to receive a human genetics doctorate from the prestigious university), Jeff knew that the research around ancestry testing wasn’t very sound at the time. She was also unsure about how she might feel learning her results, especially given the painful and traumatic stories behind European ancestry in black people. But another major concern was that the test was free.
“I learned that anything that is given away to you for free is not actually free,” Jeff said. “That means you’re the product.”
As one of the few black women in her field, Jeff has made it her mission to talk about genetics in ways that are both accessible and empowering to black folks—in her words, making them “the shareholders of their own DNA.” Her podcast, In Those Genes, unpacks the complicated relationships black people have with their genetic identities, using genetics to decode the lost identities of African descendants.
In doing so, Jeff hopes that a better understanding of the potential and the power of African genomes helps build a better future for the black diaspora.
“While a lot of research has been unethical, we do have a lot of power within our genome. We have to remember the control we have in sharing our data.”
Part of that work is making clear how genetics science works and what, exactly, it can tell black people about their past. As it turns out, the genomes of African descendants are uniquely valuable:
“Because our genomes are the descendants of ancestors that were thousands and thousands [of] years ago, we have a lot of information in our genomes about how the body has evolved from generation to generation,” Jeff said. “It really tells a beautiful story of how the body is learning from changing environments to survive anything from our hair texture, from our height and our skin color—all of these things that make African descendants unique and beautiful is really a nice story of evolution that we can read in our genomes.”
But that long history also means there’s a specific, monetary value attached to African-descended genomes: because they are older than European genomes, pharmaceutical companies are interested in using them to help identify how to create better, more effective drugs.
To explain this, Jeff uses the metaphor of maps and navigations. For a pharmaceutical company, the aim is identifying where in the human genome you can place a drug target so that it will be effective.
“If I have a European genome, I might get a zipcode or the street name. And I’m thinking that the drug target is somewhere on this street, but I don’t know exactly where,” she says. “If I had access to an African genome, I don’t just have the street name or the zip code. I actually have the address and I know exactly where I’m going to place that drug target.”
“That’s an extremely valuable data proposition for a pharmaceutical company,” Jeff continues.
But these possibilities are not widely known among the diaspora. Instead, genetics companies have focused mainly on providing information about ancestry. This is fraught, not only because of the complicated histories of enslavement and sexual abuse, but companies providing these services are often not transparent about how they’ll use the data—like who or what it could potentially be sold to, or who will have access to it.
This lack of information prevents black people from participating in genetic research in a more mindful way—and forcing accountability from genetics and pharmaceutical companies.
“I don’t ever say no one should take a genetic test. I actually feel quite the opposite. We all should be engaging in genomics research, but we should be engaging in genomics research when we know everything about what can happen,” she says.
In being restrictive about how they give away their DNA, black folks can not only force companies to be more transparent about their revenue models but shift focus from ancestry to black futures—making sure that African-descended genomes are used to help strengthen and heal black communities.
“Talk to me about diseases and illnesses that are impacting black people specifically, and I would be much more engaged to want to help,” Jeff said. “If I can give my genome to a company and I know that their intentions are to help generations behind me, then I feel like I’m doing something good, not only for myself but for the relatives that I might not ever meet.”