Judsen Schneider ’03 remembers sitting in a coffee shop in Nashville, Tennessee, sketching out rough ideas with his friend to form a firm that would bridge the widening divide between clinicians and the growing number of genetic tests that might give them answers, options, and hope.
That was four years ago. Today, NextGxDx—founded in 2012 by Mark Harris, Schneider’s friend—is the only online marketplace for genetic testing. Think of a site like Orbitz, but instead of airfares and rental car rates, you can search for tests relating to hereditary colon cancer or cystic fibrosis.
“We are bringing a level of transparency to the genetic testing industry that has not yet been seen,” says Schneider, scientific director for the Nashville-based startup. “It (testing) is exploding as precision medicine becomes more and more common. Genetics plays a key role in that.”
It’s been more than 10 years since scientists completed the genome sequence, and since then, the pace of research into cracking the mysteries, subtleties, and complexities of our human genome has skyrocketed. As more is learned about our genes, a greater number of tests are emerging to help us understand—and possibly even treat—rare diseases and conditions. More than 16,000 of them are available, developed for more than 3,000 diseases, about 2,000 of which have diagnostic genetic tests available for use in a clinical setting, according to the Centers for Disease Control.
“To understand the genome is to understand how life works,” Schneider says. “The genome is like a complex computer. It can function like any computer, but encodes its own development, its own software. Understanding how genes work unlocks how diseases work, health works, human behavior works. Still, we barely understand it. The human genome has been sequenced but a lot is still not known about how it works. To be able to help shape how genes interact with health care is really interesting.”
Schneider, a Nashville native, earned a Ph.D. in cell and developmental biology at Vanderbilt University. But as much as he was bitten by the biology bug at K, the real reason he trekked north for his undergraduate experience was to swim, he says.
“Initially, it was the caliber of the swim team that attracted me. I was looking for a college where I could swim,” he says. “Of course, I received a great biology education. I looked at Division I to Division III schools. K had the best fit.”
When it came time to study abroad, Schneider looked south, spending a quarter in the Costa Rican capital, San Jose. It was there that he saw how economic development can empower individuals and communities, a lesson that represents a significant chapter in his NextGxDx story. A quote from retired men’s swim coach Bob Kent stays with him.
“Coach Kent fostered a really awesome environment. He would always say, ‘you can do a lot, but how much effort are you willing to give?’” Schneider says. “So I study a language for two quarters and then get dropped into Central America. It was a fantastic way to prove to myself that I could take on challenges and succeed. K does a good job preparing its students for any scenario, and more than other schools gives them confidence to explore many challenging situations that might produce a lot of fear in people.”
NextGxDx has been steadily growing, he says, so much so that more hiring had to be done to keep pace with the growth, to diversify and broaden the scope of services the company provides. The most recent addition? Gillian Hooker ’00, an expert in genetic counseling with a Ph.D. (Yale University) and a long list of impressive academic and scholarly accomplishments, including time at the National Institutes of Health, Georgetown University and Johns Hopkins University.
Hooker is a Kalamazoo native and Heyl Scholar. She didn’t knew Schneider even though their tenures at K overlapped. “It made me smile when I found out we both went to K.”
Having a doctoral degree in molecular, cellular and developmental biology means she has the scientific expertise to contribute to a whole range of genetic questions. It was the genetic counseling aspect that drew Schneider to hire her, he says. But it sure didn’t hurt that she went to K.
“The fact that Gillian attended K did play a role in her hire, from the standpoint that I have a deep understanding of what a K degree means,” Schneider says. “It was more the soft skills that K helps you develop—such as critical thinking, problem solving, and the ability to confidently take creative risks—that were important for the particular role.”
There is a softer side to the data-driven science of genetics. It’s the component that takes into account how people internalize the data that come from the tests, what they do with it, how they process the results, or if testing should be done at all. In some ways, it’s as important as the results themselves, Hooker says. There are always emotions behind the hard realities of a disease, and the clinicians and other medical personnel who administer the tests need to know how to communicate with their clients.
“I think a lot about the testing decisions people make and how the results of genetic tests impact their decision-making going forward,” she says. “A lot of their personal values go into that. It’s helpful to have that perspective and think practically how this plays out in the clinic.
“Sometimes it’s the desire to know if you are predisposed to have a disease. Other times it’s about not having answers as to why their child is sick. We call it a ‘Diagnostic Odyssey.’ Developmental disabilities. Developmental problems. Going from specialist to specialist, performing test after test and getting nowhere. It could be as simple as a clinician who didn’t know the right test exists. We throw open the gates. It can be heart-wrenching, but empowering, too.”
It’s never easy. Not in a field that deals with diseases, conditions, and syndromes that adversely affect quality of life, sometimes significantly. Schneider and Hooker are doing their part to shed light upon the confusion that has surrounded these maladies for so long.
Hooker’s Senior Individualized Project—an internship at Pfizer with Ann (Burt) Berger ’71, Ph.D., a senior research scientist at the pharmaceutical giant—was in many ways a defining experience for her, one that confirmed that the K academic culture in which she’d been immersed was a unique one.
“It was the ability to develop my own plan. It really had an impact,” she says. “To be autonomous, to take chances with it, be creative with it. That’s very empowering. I came to the realization that life and work can be more fun when you forge your own path. Others look for a path before them to walk down. At K that was not the case. The message was always: ‘It’s always better if you create your own path.’”