One of the biggest buzzwords in health care right now is pharmacogenetics, also known as personalized or precision medicine. During his latest State of the Union, President Barack Obama announced he was launching a $215 million Precision Medicine Initiative to bring us closer to curing diseases like cancer and diabetes, and to give Americans access to the personalized information needed to keep healthier. Last week, the governor of California unveiled a similar $3 million public-private statewide initiative.
As interest and investment in personalized medicine increases, University of Montana Associate Professor Erica Woodahl stands in a prominent position. She's currently the only person in the continental United States doing pharmacogenetic research on an indigenous population.
Pharmacogenetics is the study of how an individual's genetic makeup interacts with certain drugs. It aims to answer why people with the same disease often respond differently to the same medication, as well as why some diseases affect racial and ethnic groups in different ways. The hope is that with increased research, physicians can make better-informed decisions about what types of medicine to prescribe and move away from a "one size fits all" model.
"If we can figure out the genetic reason, or the genetic basis, for these differences in responses, then we can think about improving medicines and tailoring medicine to an individual's unique genetic makeup," Woodahl says.
Woodahl began her work with the Confederated Salish and Kootenai Tribes in 2007 after the Tribal Health Department approached her about ways to improve the efficiency and outcomes of cancer chemotherapy. Since beginning the project, Woodahl's research team has also included genetic research on how the tribe's DNA makeup affects the metabolization of heart medications.
Although Woodahl's work could directly benefit the CSKT community, she says it was not a simple process to just start swabbing cheeks for DNA samples. A long-standing mistrust between researchers and indigenous populations has made such work difficult and contentious. Woodahl says she overcomes the challenge with complete transparency and communication, as well as a commitment over time.
"We had to address that and put it out there like, 'Yes, we acknowledge that there is a history of bad research, and bad research in genetics in particular,'" she says. "And how do we overcome that so we can get to a place that we can start to talk about the implementation of pharmacogenetics and how that could help health?"
LeeAnna Muzquiz, medical director at Tribal Health, has worked with Woodahl since the beginning of the project, working as a liaison between the research team and tribal community. As a physician, Muzquiz is well aware of the lack of research on indigenous communities and attributes this, at least partially, to the hesitancy that many tribal members feel about genetic research.
"We've had experiences where people have come and done research and then never shared the information or we never really knew what happened, and it didn't really have a positive impact on the tribes or the community," she says. "We just sort of felt like we were used."
But Muzquiz says dealing with Woodahl and her research team has been an entirely different experience.
"It's never been about their advancement or their personal gains or anything like that," she says. "It's really been about advancing the knowledge and the information about our people."
With such a legacy of poor practices, Woodahl says many researchers are not willing to put in the time necessary to build trust and engage with the Native community. That's what makes her project rare in an otherwise expanding area of research.
"Pharmacogenetics has been a pretty solid field for about 15 years, but there has been virtually nothing to engage Native American communities," she says. "... It takes continued commitment. You have to keep doing it year after year. Even after the grant gets funded or the paper gets published, you have to keep going back and keep talking with the community and making sure that they get a benefit, too."
Woodahl says she's been approached about sharing the DNA samples, but she has denied each request and will continue to do so. She says it's important for her to remember that the aim of her research is first and foremost to benefit the CSKT community.
Woodahl's research is an ongoing project, but she has already found evidence that Salish and Kootenai genetics are unique in the way they affect the metabolization of drugs. She hopes that, over time, providers like Muzquiz will implement her findings and that it will benefit patients in the future.