TABLE 3.

Themes and respondent’s quotes about the moratorium and genetic research.

Broad categories from overall responses	Respondent’s quotes
Need more information and education on genetics and the moratorium	“We need to have more information on this subject.”
	“Eventually I can see the moratorium being lifted, but there are still a lot of unethical researchers and [the] community [is] still not knowledgeable about research issues to make the right decisions. Need more education in the community about issues related to research.”
	“I never know [sic] there was a moratorium. Perhaps educating the community would be beneficial at community level.”
	“I wonder why it’s been this long and even I wasn’t aware of it.”
Conflicted about the moratorium and genetic research	“Moratorium [on] genetic research [was] implemented for a reason. Lifting may cause disparities of misuse.”
	“I think lifting the ban will benefit the Navajo people.”
	“This isn’t a simple question of ‘yes, it should be lifted’ or ‘no, it should not be lifted.’ The NN need to have the proper staff, resources, policies, procedures, and infrastructure in place to exercise appropriate oversight and to protect our people. Without those in place, I would not support a lift of the moratorium. I support genetic research but only if it’s done in an ethical manner, with proper consent and transparency with the tribe/people/participants involved, and for their benefit.”
	“I am torn between the benefits that genetic research would provide with the potential for that information being used to discriminate against individuals for things like health insurance. Information has to be protected and not utilized as a justification for discriminatory practices.”
Importance of health research to Navajo people	“I think research done in the Navajo Nation could be very beneficial in understanding the disease patterns that so many of our people fall into, however, only if it uses the community-based participant research approach, meaning it connects with the tribe and asks what they want from the researching [sic] and keeping them involved every step of the way.”
	“I would and have participated in health research that did not require specimens. I feel that giving away a piece of me, however helpful it may be to ‘research’ and to bettering our Native community, there will always be that one person or researcher who will use it for harm or not understand the respect these samples should be treated with.”
	“I think genetic research related to health is important for a population as small as ours. I don’t think genetic research for molecular anthropological and similar research is important.”
	“Medical issues that may be caused by uranium exposure is of particular importance to me. I have a lot of autoimmune diseases and always wonder if its hereditary or caused by uranium exposure.”
	“If studies help end diabetes, alcoholism, obesity, it helps.”
	“If this research can help reduce the risk of cancer, I would fully recommend [this] research to be done.”
Incorporation of and respect for Navajo cultural teachings	“With strong policy and regulations in place, the moratorium should be lifted so that research can be done to address the monsters ailing our people. Diné people have the benefit of using both traditional and western medicine to address illness. It shouldn’t be exclusive, one way or the other. Wise people would say, meet your prayers halfway.”
	“There is no reason for this research. We have our medicine and our culture.”
	“The moratorium should be lifted but if genetic research was to happen on the Navajo Reservation or to any other Native group, the respect for cultural boundary, knowledge and respect should be practiced in a positive ethical way.”
	“There should be considerable consultation with medicine healers and the decision to lift or not, they should have major say.”
Concerns about research ethics	“Navajo Nation should be transparent to allow how diseases could be controlled through a study that can benefit the health of all especially in the 21st century.”
	“…data misuse, data breaches, breaches in confidentiality, breaches of third party misuse of data, exposure of the participants genetic information, and risk of exposure to allow other researchers (private/governmental) agencies to collect and reproduce or replicate genes to fit another propaganda is likely.”
	“Although I am optimistic about genetic research and it’s benefits, I am concerned about privacy and protecting our Navajo people.”
	“Controlling ownership of results of research by Navajo Nation.”

The categories are listed in order of decreasing number of responses (top to bottom).