Navajo Nation Reconsiders Ban on Genetic Research Tribal Leaders Are Developing a Policy for DNA Analysis and Data Sharing

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The Navajo Nation’s vast reservation in the southwestern United States is home to 174,000 people.

SOCIETY Navajo Nation reconsiders ban on genetic research Tribal leaders are developing a policy for DNA analysis and data sharing.

BY SARA REARDON moratorium on genetic research. The tribal tribal lands, in large cities such as Phoenix, government banned DNA studies in 2002 to Arizona. “We spend millions of dollars out- hen the Navajo Nation opens its prevent the misuse of its members’ genetic sourcing [care] for cancer and diabetes,” says first oncology centre next year in material. Although there is still some apprehen- Walter Phelps, a delegate to the Navajo Nation Tuba City, Arizona, clinicians there sion about allowing researchers access to Navajo Council. As the tribe — a nation independ- Wmay be able to offer a service that has been DNA, the tribe’s leaders increasingly see genetic ent of the United States — tries to expand the banned on tribal lands for 15 years: analysing research as a tool to improve medical care for health services it offers, he says, “the morato- the DNA of Navajo tribe members to guide the 174,000 residents of their sprawling reserva- rium could become a barrier when blood and treatments and study the roots of disease. tion, which is roughly the size of Scotland. tissue have to be collected”. That’s because the Navajo, the second-largest As it now stands, Navajo people who live on Phelps is now working on the effort to Native American group in the United States, are the reservation must drive hundreds of kilo- create a policy by which the Navajo Nation considering whether to lift their long-standing metres to access specialized medical care off would approve genetic-research projects

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and maintain control of DNA samples. protocols and represent its own interests. had later been used in studies of schizophrenia, The research-ethics board run by the tribal Still, some Navajo have lingering questions migration and inbreeding without their con- government’s department of health is work- about whether the tribal government can pro- sent. The university reached a settlement with ing with tribal officials and traditional leaders tect the privacy of their genetic material and the tribe in 2010, paying US$700,000 and and holding a series of public hearings to solicit maintain control over its use. Such concerns returning the blood samples. opinions on the matter from tribe members. helped to shape the current ban back in the Sara Hull, a bioethicist at the US National The group hopes to deliver a draft proposal early 2000s, when the Navajo Nation’s depart- Human Genome Research Institute in by the end of October. Whatever the tribe ment of health conducted an outreach cam- Bethesda, Maryland, says the case helped to decides could influence other Native American paign about genetics and medical research. change how researchers engage with the people groups, who have tended to be wary of genetic “In the absence of a research code and lack they study, by raising awareness of the com- studies because of past cases of scientists of expertise at the time, they decided it was not plexities of dealing with vulnerable minority conducting research without consent. a good time to move populations. For Native Americans, privacy is The Navajo Nation’s new oncology centre forward with genetic “As Native a pressing concern. Science-funding agencies provides part of the impetus for revisiting the research until they Americans, we and journals often require researchers to put genetic-research ban. It will be the first such were able to develop a have a problem the genetic data they collect into public repos- facility on Native American lands outside research policy,” says with trust itories, but the relatively small size of many Alaska. Allowing some genetic testing at the Nanibaa’ Garrison, a because we have tribes can make it easy to identify individual centre could help physicians to identify the member of the Navajo been violated so members in a genetic database. In recognition most effective therapies for each patient, says Nation who is a genet- much.” of this, the US National Institutes of Health Lynette Bonar, chief executive of the Tuba City icist and bioethicist at sometimes works with researchers it funds to Regional Health Care Corporation in Arizona, Seattle Children’s Hospital in Washington. develop methods for sharing data on a minor- which will run the facility. The tribe had reason to be cautious. “As ity group without compromising its privacy. Creating a repository for such genetic material Native Americans, we have a problem with Garrison, who is helping the Navajo Nation on Navajo land would also enable research into trust because we have been violated so much,” to develop its new policy, says that the plan is the genetic and environmental factors under says David Begay, a pharmaceutical scientist at likely to include rules on what types of research lying many diseases, not just cancer. the University of New Mexico in Albuquerque will be allowed, who will have access to tribe So far, Phelps says, the idea of allowing some and a member of the Navajo Nation’s human- members’ genetic material and information, genetic research has not drawn major opposi- research review board. “In the past, our data and who will provide oversight. It is also likely tion. Many of the tribe members consulted have been misused.” to require that the tribe maintains ownership about lifting the moratorium have generally Native Americans in the southwestern United of its members’ DNA samples and data. supported the idea after learning how physi- States want to avoid repeating the experience The policy that the Navajo Nation ultimately cians could use genetic data to diagnose dis- of the region’s Havasupai tribe. In 2004, the produces could serve as a template for other ease and tailor treatments. And the number group sued Arizona State University in Tempe Native American groups, says Ellen Clayton, of Navajo tribe members who are geneticists over alleged misuse of tribe members’ blood a bioethicist at Vanderbilt University in Nash- and medical experts has grown since 2002, bol- samples. The Havasupai said that the samples, ville, Tennessee. “If they reach an agreement, stering the tribe’s ability to evaluate proposed which had been collected for diabetes research, I think it will be influential.” ■

FUNDING research groups and prompting a brain drain. They hope to influence Temer’s administration as it revises the 2018 budget proposal (see ‘Drastic cuts’), which was submitted to Congress Brazil’s scientists by the executive branch in August. It included a 16% cut to the Ministry of Science, Technology, Innovations and Communications (MCTIC). The Temer administration has promised to plead to save funds release a revised budget in the coming weeks. If the 16% cut remains, it would leave about 2.7 billion reais for 22 federal laboratories, If budget levels do not increase soon, research institutions 73 National Science and Technology Insti- could start shutting down next year. tutes and Brazil’s major science-funding agencies — the National Council for Scientific and Technological Development (CNPq) and the BY CLAUDIO ANGELO On 3 October, the government announced Funding Authority for Studies and Projects. that it will release 440 million reais to science “This means institutions will shut down by nxiety is growing in Brazil over the agencies to help keep them afloat until the August next year,” says Luiz Davidovich, presi- country’s collapsing research budgets. end of this year. But that is only about 20% of dent of the Brazilian Academy of Sciences. President Michel Temer slashed what’s needed, said the Brazilian Society for the His estimate is based on what happened this Afunding for science by 44% in March and has Advancement of Science in a statement. year. The MCTIC started 2017 with 5 billion proposed additional decreases for 2018 — even Researchers held a march on 8 October in São reais. In March, after the 44% cut, the ministry as some science institutes run out of money Paulo — the third such demonstration this year was left with 2.8 billion reais, or 3.2 billion reais for basic needs, such as paying electricity bills. — protesting against the shortfalls. And in late if money for special projects such as the Sirius The 2017 science budget, at 3.2 billion reais September, 23 Nobel laureates and 9 of Brazil’s synchrotron is included. As a result, institutions (US$1 billion), is the lowest the country has scientific societies warned Temer that the ongo- began running out of cash in September. seen in at least 12 years. ing funding uncertainties risk dismantling “We don’t have money for electricity bills or

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