"As Native Americans, we have a problem with trust because we have been violated so much," David Begay, a researcher at the University of New Mexico and a member of the Navajo Nation's human-research review board told Nature News. "In the past, our data have been misused." But it's the potential for improved disease diagnosis and treatment development that has many Navajo backing the lift of the ban, and having their own oncology center means genetic material could remain under Navajo care.
The research-ethics board is working alongside Navajo leaders and officials to develop a new policy and they've held public hearings to get a sense of what tribe members think. The proposal is expected to include research regulations, limitations on who can have access to any genetic material and an oversight framework. The board hopes to have a draft proposal prepared by the end of the month.