Scientists developing vaccines for the coronavirus disease say it’s critical to recruit diverse volunteers—especially Native Americans, who have been hit hard by the pandemic. That’s why Pfizer set up sites for its ongoing clinical trial on the Navajo and White Mountain Apache nations. But it’s not easy to repair decades of broken trust between Indigenous people and non-Native scientists. Historical traumas in the name of research remain fresh in many memories. KNAU’s Melissa Sevigny reports, some practitioners of both traditional Diné medicine and Western medicine want to heal that divide.
More than 44 thousand people worldwide volunteered for the Pfizer study; half got the new vaccine and half got a placebo. One percent of those volunteers are indigenous Americans, among them, Derrick Leslie. He works in emergency operations for the White Mountain Apache tribe.
"Having a front row seat to all of the heartache, the pain, and all the suffering that this virus has caused my people … this is really my way of contributing to the greater good," Leslie says.
But Leslie’s family didn’t see it that way. They told him the vaccine was dangerous, and the people behind it couldn’t be trusted. Leslie tried to ease their fears. "The more opportunities for indigenous people to be included in research, the healthier world we’ll have," he says. "People will always be scared until you show them differently."
Many Native people say they have good reasons to mistrust doctors and scientists. Christine Ami (om-nee), anthropologist at Diné College, points to a long legacy of research abuses. "When we take a look at this arena, and we understand that we had no voice, and nobody gave us an option..." She’s talking about past traumas. In the sixties and seventies, doctors sterilized Native women without their consent. In the nineties scientists misused blood samples from the Havasupai. Ami says the list goes back for centuries.
She’s not against research, but she says it has to be done the right way, with informed consent and community support. "How do we make that not just a checkbox? How do we make that the priority?"
Pfizer partnered with the Johns Hopkins’ Center for American Indian Health and sought two forms of consent for the clinical trial—first, from the Navajo Nation Human Research Review Board, and second, from individual volunteers. At the Chinle study site, Naiyahnikai Gorman guides Navajo tribal members through the lengthy consent process, which walks the participants through the risks and benefits.
Gorman sees the vaccine as the way out of the pandemic. "The word that comes to my mind in Navajo is azee’. This word means medicine. Every time that we’ve been through hardships or suffering there’s always been a medicine that comes and that helps the people."
Pfizer says their vaccine has proved 95 percent effective at preventing COVID-19. But anxiety over the clinical trial lingers, partly because it happened so quickly—a response to the speed and devastation of the pandemic. Medicine man David Tsosie says the Diné Hataałii Association, a group of herbalists and healers, wasn’t consulted prior to the trial’s approval by the review board, "and so there were some concerns on the part of the medicine people, with regards to: what are they talking about, these vaccines? What does it entail?"
Tsosie reached out to Johns Hopkins and local universities for an explanation of how the vaccine is made. He was reassured: nothing about the process goes against Navajo beliefs. It helped that some of the scientists who explained the vaccine to the medicine people were Native themselves, like Naomi Lee, a citizen of the Seneca Nation and a researcher at Northern Arizona University.
Lee says, "I think that trust, oh, there’s a Native researcher that does something very similar in their own lab, helped ease some of their concerns. Do I think that we convinced them fully, no. But maybe we provided some knowledge that will help them feel a little bit more trusting of what is going on with the vaccine itself."
Lee is part of the COVID-19 Prevention Network, which offers guidance to pharmaceutical companies on how to do ethical clinical trials. Her advice includes: Have clear, specific consent forms; speak the language; and consult with traditional healers. Lee says building trust isn’t easy, but she believes real change will happen when Indigenous people aren’t just asked to volunteer for clinical trials; they’re the scientists running them, too.