The Economics of Genomics
New Genomics Core Manager Bony De Kumar talks with North Dakota Medicine about genomics, personalized medicine, and the new ethical terrain humans are treading.
In 2018, Bony De Kumar had a choice to make: Columbia University in New York City, or the UND School of Medicine & Health Sciences.
And De Kumar does love jazz ….
But nearly a year after opting to become manager of the Genomics Core at UND, De Kumar is happy with the choice he made, even if there are fewer jazz clubs in Grand Forks.
“When I came to UND for an interview, I found a lot of energy and people were talking about doing good things in genomics,” says De Kumar, adding that he finds the stereotype that universities can be bureaucratic backwaters untrue. “The kind of support I’ve received here has been great. When I interviewed, I realized UND was not just looking for a service provider, but a collaborator. It was a good decision.”
Genomics is the study of the structure, function, mapping, and editing of genomes—the genes and noncoding DNA material that constitute an organism. The Genomics Core at UND is an interdisciplinary research center, originally financed by the National Institutes of Health as a Center of Biomedical Research Excellence (CoBRE), dedicated to providing state-of-the-art genomics resources—technical training, data analysis, grant assistance—to investigators at UND and from institutions across the region, as well as external commercial clients.
“Only 2 percent of any genome is used for coding genes or proteins,” says De Kumar, who specializes in epigenetics and bioinformatics. “Researchers initially called that remaining 98 percent of material ‘junk’ DNA, and that’s where I got my start. Now we know that this stuff is not junk, but is unique to each person and plays a role in genes’ regulation.”
Such technology for identifying and manipulating genes has come a long way in a very short time. To hear De Kumar tell it, in the 1980s nearly $20 billion and 20 years were required to sequence one human genome. Thirty years later, researchers are sequencing a genome for under $1,000 in a few days, with the next goal of sequencing a genome for under $100.
This type of work is valuable in so far as it helps biomedical researchers, clinicians, and even private firms tailor their diagnostic and treatment protocols to individual patients dealing with often complex conditions like cancer and diabetes. There are already companies that claim to be able to determine the likelihood that someone will develop any number of conditions based on their genetic profile.
This simultaneous reduced cost and explosion in commercial services have brought genomics into the cultural mainstream and helped usher in the era of “personalized medicine”—not to mention attracted resources to North Dakota that gave the core a “mandate” to broaden its reach, says De Kumar.
But even though private firms exist for genetic sequencing and analysis, De Kumar argues that it’s still more advantageous to the state and region to maintain a core facility—run by and for researchers—at a public institution.
“Having a [nonprofit] core here helps create that leadership group who can handle genomics-based studies,” he continues, explaining his vision of turning UND into one of the top training facilities for genomics researchers in the country. “Beyond providing services to clients like the smaller regional colleges or the USDA’s [Human Nutrition Research Center], my focus here is to train people—principal investigators, postdoctoral researchers, graduate students, even medical students. If they learn these techniques here, they can see how they can use it in their own work, wherever they end up.”
Learning from Henrietta Lacks
There is, after all, money in genomics, and building a good team around genomics at UND can help attract not only federal research dollars but private investment. Multiple industries have already spent heavy sums on the field, seeing the technology and its applications as a cash cow; public universities would be remiss not to maintain their seat at the table.
Beyond attracting resources, though, such institutions also tend to be the only places where the tricky ethical and legal questions new technologies raise are taken seriously. After all, how much should humans know about themselves, how do we grapple with the “probability” of developing this or that disease, who “owns” genetic material, and how will our genetic data be used (and by whom)?
These philosophical questions—which both drew De Kumar to the study of genetics and forced him to second-guess his former career trajectory—are inescapable. Having begun his career in agricultural biotechnology, and genetically engineering bananas in particular, De Kumar says he grew concerned by what he saw as the short-changing of family farmers, whose seeds—and thus livelihoods—were being taken from them.
“I’m not worried about the argument that [genetically modified organisms] are bad for us, but I do feel that seed should be the property of farmers, not corporations,” he says. “These farmers bred these seeds over generations and that’s a lot of hard work—selecting the best seeds and passing those down through families. And then some company takes that seed and manipulates it and then claims that they own it, ignoring the thousands of years of hard work other people did to create that seed. I wasn’t comfortable being part of that.”
Although similar ethical questions have been answered in part for Americans worried about the use of their genes through passage of the Genetic Information Nondiscrimination Act (GINA) of 2008, which bans the use of personal genetic information in health insurance and employment, emerging technologies are forcing researchers and policymakers to consider new questions all the time.
Imagine your genetic information is acquired by a pharmaceutical industry. Are you entitled to any revenues the company generates based upon information that emerged from your genome? De Kumar says that, despite GINA, there aren’t yet many state or federal regulations helping individuals or firms navigate such questions.
“The business model [of gene sequencing companies] is that while they give you some fun facts about your genome, they make money selling your data to the pharmaceutical companies working on developing new drugs” he says, referencing the $300 million deal genomics firm 23 and Me signed with pharma giant GlaxoSmithKline in 2018. “This is what happened to Henrietta Lacks [the source of the still-used line of HeLa research cells]. The question there was if a tumor is taken out of the patient, which she didn’t want since it was going to kill her, and some researcher develops a cell line that makes someone else a lot of money, who owns that material and who benefits from that? Because we’re talking potentially millions of dollars.”
Scaling down a bit, De Kumar, who hasn’t had his own genome sequenced, too wonders how much he really wants to “know” about himself.
“Do you want to live with that fear that you have X percent chance of heart attack,” he asks with a smile. “I don’t want that. Even if I’m predisposed to something, I don’t want to live in that fear.”
In a silent way
In the end, it makes sense that De Kumar is a jazz fan— Dizzy Gillespie, Miles Davis, and Duke Ellington in particular. Listening to such improvisational and often irreproducible tunes is like studying genomics. Miles Davis never performed any song the same way twice, after all.
And so it is with people.
“We think of human beings as a single entity or group, but everyone is different,” De Kumar says, calling the current moment in history the most exciting one for biomedical researchers perhaps ever. “How we metabolize, how we respond to medications. Every cancer is different, and so the genome is where the biology is going.”
De Kumar predicts in a decade or less, most medicine will revolve around genomics in one way or another.
“Researchers see cancers and sequence those cells from patients and put this data into the database and see what drugs worked or not, what was the chance of recurrence, and so on,” he concludes. “In this way, physicians can already make more informed decisions about what therapies to offer or not based on the genetics of the patient.”
And that’s no jazz.