The Navajo Nation is weighing whether to end a 15-year ban that prevents genetic research on their members. The decision comes ahead of the opening of the independent nation's first oncology center, reports Sara Reardon for Nature.
Genetic research could allow clinicians to tailor treatments to individuals and help researchers search for the roots of disease in the genetic code. The potential for genetics to inform experts' understanding of biology and lead to treatments is great. Along with the new medical center, lifting the ban would help bring medical care to residents equal to that found off the reservation.
Yet genetic testing for individuals has raised many ethical issues about privacy. And the situation is even more complex among Native Americans who have long fought for control of their lands, artifacts, remains and more, as Rose Eveleth reported for The Atlantic in 2015. "[C]oncerns about genetic appropriation carry ominous reminders about the past." Hence the existence of the ban.
But if this limit remains, it would diminish the health services the new oncology center could offer. Reardon reports that there isn't much opposition to lifting the ban, but rather diligent efforts to be sure it is done thoughtfully.
"As Native Americans, we have a problem with trust because we have been violated so much," David Begay, a pharmaceutical scientist at the University of New Mexico in Albuquerque and a member of the Navajo Nation’s human-research review board tells Nature. “In the past, our data have been misused."
That past isn't limited to early American history, Reardon explains. Starting in 1990, researchers from Arizona State University in Tempe collected blood samples from members of the Havasupai people of Arizona. The Havasupai say researchers collected samples for diabetes research, Reardon reports, but they later used these same samples in studies of depression, schizophrenia, migration and inbreeding. The Havasupai sued in 2004 for use of the materials without informed consent from its members. In 2010, the university settled with the tribal government and returned the blood samples.
The history of medical and research ethics is rife with cases where informed consent — in which researchers or clinicians fully explain how samples will be used — is lacking. Perhaps most famous is the story of Henrietta Lacks, an African American woman whose tumor cells' unusually ability to keep proliferating led to their use in many branches of research without her family's knowledge.
As Eveleth detailed for The Atlantic, the complexity of issues surrounding genetics research and Native American groups is deep. To be sensitive to these issues during the development of research questions and a plan of action, researchers need extensive knowledge of the culture and history of the people they hope to work with.
Kim Tallbear, a researcher who specializes in racial politics and science at the University of Texas at Austin and a member of the Sisseton-Wahpeton Oyate, told Eveleth: "I think people who want to do genetic research on Native American topics really shouldn’t be doing it unless they’ve got a really considerable history of contact with native communities."
Even if all research protocols are carried out appropriately, people from small genetic pools can be more readily identified when their records makes its way into public repositories.
Though slow, progress is being made. DNA evidence and court opinions also helped to insure that the remains known as "Kennewick Man," an ancient Paleoamerican man, received a burial by five Native American tribes.
As Reardon reports for Nature, the Navajo Nation Council will consider a proposal for a policy that could guide research projects and still give them control of DNA samples. If they develop and implement the policy, others may follow.