Introducing herself with the traditional Māori greeting, Fulbright scholar Dr. Melanie Cheung (Ngāti Rangitihi, Te Arawa) shows that her feet are planted firmly in the world of her indigenous people of New Zealand. It is this commitment to exploring both indigenous and Western scientific paradigms that brought Cheung to NIH recently to present her research findings on a neurodegenerative illness affecting her people—Huntington’s disease.
Cheung painted a picture of the rich culture, mythology and distinctive crafts of the approximately 600,000 people in New Zealand identifying as Māori. But, she revealed that Western-centered approaches are currently failing indigenous people when it comes to Huntington’s disease, a progressive brain disorder that, according to Cheung, is 10 times more prevalent in the Māori people than any other population in the world. The familial disease involves changes in personality, movement and thinking and inevitably ends in death. With no cure, Māori families have been watching the disease destroy their loved ones’ ability to feel, think and move.
“What’s very interesting with this disease is it’s in families,” she said. “We have big families. That has to do with our culture. My tribal elders wanted us to do research in a Tikanga Māori type of way—using ceremonies to acknowledge spirit. We believe there’s continuity between the physical and spiritual worlds, that there is no separation between the two. The work I’m doing is really about making a Māori-responsive, brain plasticity-based training program to treat Huntington’s disease.”
Based in San Francisco at the Brain Plasticity Institute, Posit Science, Cheung is proving to be a leader in the science of health disparities since her research is about integrating biomedical science and cultural aspects—exploring both indigenous and Western scientific paradigms to help people with neurodegenerative diseases.
Her work combines experimental neuroscience, bioethics, tikanga (ceremony/customary practice) and Mātauranga Māori (Māori traditional knowledge).
“Respect is the most important thing and knowing cultural practices is important,” she said. “Māori have a process of welcoming strangers with ceremony, then they become family. I recognized that I needed to do the same ceremony with the post-mortem human brain tissue that I was growing primary cell cultures from.”
When a person and their family gives the gift of their brain, Cheung honors that gift through ceremony, which is about acknowledging the relationships that extend out of that brain.
“The brain has come from a person, a human being who belongs to a family and community,” she explained. “I acknowledge their passing. I ask that their family is comforted in their grief. I acknowledge the gift that they have given our research. Then I welcome the brain to its new home in our laboratory and welcome a new function to the cells that may help us to understand more about the disease.”
Over the past 7 years, she and her research team have worked closely with a large Māori family with Huntington’s disease. Her current research projects include:
- Developing and testing a novel brain plasticity-based training program for Huntington’s disease;
- Developing a model of mutually beneficial partnership between Māori families and biomedical scientists and clinicians;
- Researching clinical and translational aspects of Huntington’s disease; and
- Teaching indigenous students as part of the Mahina Project, a biomedical and behavioral health training program. It is an NIH-funded T37 Minority Health and Health Disparities International Research Training Program conducted through the Indigenous Wellness Research Institute at the University of Washington.
In her research, Cheung, who received a doctorate in pharmacology from the University of Auckland, believes clinical excellence, cutting-edge science and cultural responsiveness are equally important.
Knowing that neuroplasticity-based therapeutics have the potential to change the ways doctors and researchers treat brain diseases, she said indigenous research methods—which incorporate spirituality, ethics and community—also have the potential to provide innovation and inspiration in the laboratory and clinic.
“Building relationships with indigenous communities takes a long time,” she said. “We worked with a large Māori Huntington’s family for 6 years before we even contemplated starting a science project with them. Our research has both [short- and long-term] goals. Short-term is about developing practical clinical solutions for them—right here, right now. Whereas, long-term is about the science, developing the treatments that probably won’t benefit them, but may benefit their children or their grandchildren. This gives them hope.”
Cheung’s lecture was hosted by NIMHD, NINDS and the Fogarty International Center.