The Akimel O’odham (Pima), a group of Native Americans from Arizona, have one of the highest rates of type 2 diabetes in the world. More than half the adults are affected, and while diet and lifestyle factors certainly contribute, scientists have long suspected that the community carries genetic variants that also affect their risk.
Since 1965, the tribe have been intensely studied by researchers from the National Institutes of Health. This work has been a boon to the outside world: It was instrumental in clarifying the heritable nature of type 2 diabetes, and its connection with obesity. But for most of that time, the Akimel O’odham have been passive participants in the research of their lives.
The NIH had promised to fund research and develop services that would improve the health of the community. But preventative studies only started in the 1990s, some three decades in, and health programs were small and delivered through the existing Indian Health Service. Meanwhile, a significant amount of money went into studying type 1 diabetes—a disease that mostly affects people of European descent.
Disgruntled, the community withdrew from their partnership with the NIH in 2003, and instead signed a $5 million agreement with a non-profit organization called the Translational Genomics Research Institute (TGen). The team have since published at least eight papers highlighting unique genetic variants that are specifically associated with type 2 diabetes in the Akimel O’odham; they are also looking other conditions that affect the tribe like kidney cancer.