Dr. Christine Ami
Diné College Associate Professor and Navajo Cultural Arts Program Grant Manager
President Jonathan Nez and Vice President Myron Lizer are endorsing an invasive clinical trial through unethical recruitment tactics. Instead of creating a space of transparency, the Navajo Nation Office President and Vice President would rather silence and censor its own community members, including myself, for bringing forth these unethical approaches of research.
(See related story: Navajo Nation takes part in COVID vaccine study)
First and foremost, I would like to establish that this community concern does not stem merely from the perspective that minorities should not participate in clinical trials or that there is no value in the participation of minorities in biomedical testing.
My concerns stem from my positionality as a Navajo mother, a Navajo wife, and a Navajo Associate Professor at Diné College where I currently am teaching SSC110: General Social Sciences, ANT201: Ethnographic Methods, and PSY413: Advanced Indigenous Research Methods.
Conveniently, the announcement of the Pfizer-BioNTech COVID-19 vaccine trial by the Navajo Nation Office of President and Vice President coincides with all three of these classes in the areas of government use of propaganda devices, the need for institutional research review boards, and the study of “dirty” research on Indigenous peoples.
All of these factors have culminated in my decision to speak up — to speak up against the tactics being utilized by my own Native government — including their concerted efforts to silence not only my voice as a Navajo youth but also to silence all of my academic training in the areas of both western and Indigenous research as I hold a Ph.D. in Native American studies from the University of California, Davis.
Remaining silent would make me complacent to the teachings I have been raised with and I hope to instill in my children and my students.
I would like to preface that I agree that there are instances in which legitimate rationales exist as to why ethnic and racial minorities should be involved in clinical trials (reasons beyond funding opportunities.)
Nonetheless, prior to discussing the positive rationalizations of the targeting of racial and ethnic minorities as well as the perusing of populations in historically socio-economic disadvantaged areas for clinical testing, there needs to be a clear presentation of the justified so-called “barriers” that exist in recruiting from such vulnerable populations, such as our Navajo Nation citizens. This includes lack of awareness, lack of transportation, and lack of childcare.
Nonetheless, as pointed out by several social justice, public health, and biomedical researchers — the major deterrent is a lack of trust. For the most part, this lack of trust is within the realm of trusting the western researchers, but what I present in this statement is another kind of distrust — a distrust with our own Navajo Nation government.
A discussion needs to take place about how community consent of the Pfizer-BioNTech COVID-19 vaccine trial was obtained for the Navajo Nation Human Research Review Board application, including the securing of approval from chapters community members, agencies, and, arguably most important, our traditional medicine people.
An analysis needs to be completed on why the Office of President and Vice President refuse to discuss the dangers associated with this trial, both culturally and biologically.
Moreover, the propaganda tactics being employed by the Office of President and Vice President in support of this vaccine must be scrutinized, especially given that their traditional primary role and responsibility is to protect their people.
To start with, research — all research (quantitative, qualitative, biomedical, etc.) on Indigenous peoples — does not exist without the historical confines of what Māori scholar, Linda T. Smith in "Decolonizing Methodologies: Research and Indigenous peoples" (1999) has explained as “dirty.”
“The word itself ‘research,’ is probably one of the dirtiest words in the Indigenous world’s vocabulary. When mentioned in many Indigenous contexts, it stirs up silence, it conjures bad memories, it raises a smile that is knowing and distrustful.”
For more than a century, researchers have come onto Indigenous lands — including Navajo lands — and have taken, extracted, and violated Indigenous populations without a blink of an eye.
But as I have stated before, what is even more surprising is to realize that some of this distrust in research is created by our own community members — individuals who have been trained exclusively in western extractive methods and leaders who are willing to put their participants (aka their people) at risk for the all too common rationalization of ‘for the betterment of the world.’”
History of dirty research with ethnic minorities
As we think about the cost and what the betterment of the world will signify to Navajo individuals, Navajo families, and our Navajo culture, we must remind ourselves of those bad experiences that Indigenous peoples have endured for the sake of research.
Studies conducted from several social justice and public health journals document examples of dirty clinical trials within historically and socio-economically disadvantaged communities.
The three most commonly referenced are with the three following communities:
• Havasupai – The Diabetes Project
• Native American women – Family Planning Services and Population Act
All three of these clinical practices have been largely condemned for their unethical research protocol, including illegal obtaining of personal data, including but not limited to blood samples and uteri.
I would also like to point out that these are just examples of cases that have been documented.
There is no way to know how many unethical, undocumented experiments have been conducted with Indigenous populations and/or what depraved tests are still being conducted.
To bring this discussion of silence, bad memories, and distrust of which Smith speaks, I am reminded of the still unanswered questions surrounding John Hopkins’ medical research at the Fort Defiance Indian Health Services (IHS) Hospital in the 1980s — the same John Hopkins University that is leading the current Pfizer-BioNTech COVID-19 vaccine trial here on Navajo lands.
Interestingly, those same journals that highlight the unethical research conducted with the Havasupai, the Tuskegee, and Native American women, also present grand gestures — utopic calls to action for both researchers and Indigenous populations — to move beyond these negative experiences with clinical research; to build trust with Indigenous populations so that they may continue their research for “the betterment of the world.”
Our own Navajo Nation government is now joining those calls to just get over the deep past of dirty research conducted on Native lands. They scold us to be positive, to be open to volunteering for this trial, to not ask questions about this vaccine research because the questions such as the ones that I bring forth in this statement create “negativity.”
But as a Navajo citizen: who teaches Indigenous research, who is a mother to Navajo children, who is a wife to a Navajo silversmith. How am I to sit back and not ask questions? It is clear that our own Navajo Nation government is concealing facts that our Navajo community members need to know so that they may make an informed decision.
Here are the larger questions that we must ask: Are we, as Indigenous people, ready to just forget? Are we, as Navajo people, ready to just move on? Are we ready to just get over it?
Navajo Nation Human Research Review Board (NNHRRB)
In order to help us move forward without moving on, the Navajo Nation Human Research Review Board (NNHRRB) was — as they describe on the board’s web page — established “in March 1996 to guarantee ethical research for the Diné people.”
As explained in a 2006 Science and Engineering Ethics Journal article, “Protecting the Navajo people through tribal regulation of research,” through a review board, follows a process and procedure specifically created for biomedical research conducted with Navajo people.
I have personally experienced this process, which included nearly eight months of gathering community support for a non-invasive ethnographic research project on traditional Navajo sheep butchering — all of which was needed to even start my project.
There were minimal risks of human harm — there is no option of “no risk” as all research comes with risk.
On the day of my presentation, I witnessed other projects being tabled for a lack of community consultation. I myself was admonished publicly as the board reviewed and scrutinized my project from a biological science perspective — despite the fact my work was clearly ethnographic and qualitative.
This is not to say that ethnographic work cannot be “dirty” or that it is less significant than biomedical clinical trials, but there were no social scientists nor medicine people to provide helpful input on my proposal.
During my project’s writing phase, my work was tabled by the Navajo Nation Human Research Review Board — not because I was using unethical propaganda devices to recruit participants (like our Navajo Nation President); not because I was testing an experimental drug with high-risk factors (like this vaccine trial is doing); but because I wanted to change the name of my project for the final manuscript to be more approachable for my Navajo audience.
Following two table votes from the review board — as a social scientist and a Navajo scholar — I dedicated my time instead to working with my collaborators, providing copies of my work to community members (which I still do to this day), and presenting my findings to chapters and Diné College’s Board of Regents. I have been editing for an official public release, which I had hoped to complete this year and submit to the review board.
If the Navajo Nation Human Research Review Board is so stringent about a non-invasive, Navajo led, ethnographic text, where is the concern for this extremely invasive, corporation lead and funded, biomedical testing?
Are the review board members going to stand by and allow for the Navajo Nation Office of President and Vice President to recruit Navajo participants with cohesive measures such as guilt, shame, dismissal, over-generalization, and the non-reporting of the dangerous side effects of this vaccine?
Are they going to allow the Navajo Nation Office of President and Vice President to ignore that the concept of “volunteering” — when payment and/or gift cards being offered to a historically, socio-economically disadvantaged community — is not defined as volunteering?
Politics of distrust of the Navajo Nation Office of President and Vice President
If we are to move beyond anything, perhaps it is now time to engage with a closer analysis of our politics of distrust for our Navajo Nation Office of President and Vice President.
Their adamant endorsement of this trial without demonstrating official community input, their clear avoidance of any discussion about their failures to enforce the current CDC guidelines, their focus of proselytizing instead of consulting with traditional medicine people, and their unwillingness to present and discuss at length on local levels the very real side effects of this trial — both biologically and culturally — demonstrate their complete disregard for the health and safety of our Navajo people in the quest for a questionable solution.
Their approach, coupled with the John Hopkins silence on these community concerns, culminate in the beginnings of a dirty research project — once again.
Moving beyond the mystery of how the Navajo Nation Human Research Review Board seemingly expedited the review process and approved this vaccine trial, let’s discuss the release of this vaccine trial information to the public.
The Navajo Nation notified their people by releasing a statement on the Office of Navajo Nation President and Vice President’s Facebook page on Friday, September 11th, 2020. An ironic date for a release of this magnitude, especially given the larger United States’ mantra of “never forget” dedicated to that infamous day of remembrance 19 years ago.
A flyer that cropped President Nez adjacent to Dr. Anthony S. Fauci, Director of the National Institute of Allergy and Infectious Diseases, accompanied a propaganda-soaked Facebook posting.
That posting announced that the Navajo Nation Human Research Review Board approved of this vaccine testing, that there was a call for Navajo Nation volunteers and a buildup of hasty and glittering generalizations supporting the need for Navajo participation in this trial. There were no facts about the risks associated with the trial.
The following Tuesday, September 15th, 2020, I stumbled upon an Office of President and Vice President Virtual Town Hall meeting — mind you, if you are not “friends” with the office’s Facebook page, there is a good chance you will miss happenings in the tribe.
I attended, hoping to get more insight beyond the glitz of their announcement and their KTNN advertisements which also echo the same nonchalant approach to this trial.
But at that town hall meeting, there were no questions to be answered.
The Office of President and Vice President continued to gift wrap this vaccine testing and presented it to us as an “opportunity.” When a few of us did ask questions via the comments section, our Navajo Nation Office of President and Vice President verbally admonished us, belittled our questions and ways of thinking, proselytized, and told us to not ask such questions about the Pfizer-BioNTech Covid-19 clinical trial because we were being negative.
The “negative” questions that were being asked include:
1) How was community consent obtained?
2) How were traditional medicine people consulted?
3) What agency resolutions for the Navajo Nation Human Research Review Board were secured?
4) What chapters presented resolutions in support of this trial?
5) What are the possible, dangerous consequences of this research — both biologically and culturally?
6) How do you consider paying participants from a socioeconomically disadvantaged population as “volunteering?”
7) Shouldn’t the Navajo Nation public have been consulted openly prior to arranging a media spectacle with Dr. Fauci?
Instead of creating a transparent space where we could learn more about the vaccine testing to come, the Office of President and Vice President went on the defensive.
Their rhetoric was and continues to remain fluffed with propaganda devices, a collection of tricks intended to sway large masses of people into a course of action.
In this case, President Nez and Vice President Lizer are utilizing propaganda devices to recruit Navajo participants in the Pfizer-BioNTech COVID-19 vaccine trial.
From the perspective of research, this is clearly a violation of ethics; from the perspective of a Navajo community member, these tactics are markers of weak leadership.
Here is a sampling of those coercive measures being presented through Facebook posts to the Navajo Nation through town hall meetings, live Facebook updates:
1) Facebook post: President Nez repeatedly overgeneralizes this vaccine trial, repetitively telling us it is just like receiving flu and measle vaccines — This overgeneralization is not appropriate nor is it correct. This vaccine trial is not like receiving the flu shot, the flu shot has been tested and approved by the FDA.
2) Facebook post: President Nez shames us and tells us not to question this vaccine test if we receive the flu shot or other vaccines — This shame tactic is not appropriate nor is it ethical. We need to question. Full disclosure should be presented and all questions should be freely welcomed and answered. That is part of informed consent.
3) Facebook post: President Nez guilts us by declaring that it is our turn to help create vaccines because of the sacrifice that others have made to create the vaccines that we have today — This guilt approach is not appropriate. Our people can choose to participate if they are fully informed — not merely because it is our turn at bat. It is part of the ethical concept of “volunteering.”
4) Facebook post: Both President Nez and Vice President Lizer misinform us with the premise that the vaccine will help the economy because people will be able to go back to work — This misleading deduction is not appropriate. The only immediate economic gain that will exist will be via the vaccine trial compensation, which will also open up our population to predators that the Office of President and Vice President have yet to address. In addition to providing compensation for willing participants, this compensation will prey on those who need the money. This test will not help our economy unless there is compensation to the tribe for Navajo participation that our community is unaware of.
5) Facebook post: President Nez dismisses our concerns and reprimands us, stating that if we do not agree, simply do not volunteer — It is our job to advocate for our people. “Volunteering” isn’t always volunteering when you live in a socio-economically disadvantaged community. It is entrapment and leading. This is coercive. In our community unemployment ranges between 40-50 percent. Coupled with other circumstances unique to our population, such as high substance abuse rates and an underdeveloped economy, this trial will create undue pressure for reluctant community members to “volunteer” for the mere payment (cash, gift card, or otherwise).
6) Facebook post: President Nez guilts us that if we lost someone because of COVID-19, we would do anything to help with a vaccine — This is where it gets personal (an odd statement in Western research but the driving force for Indigenous research) — Both of my grandparents passed away this summer because of COVID-19. The Office of President and Vice President dares to use guilt tactics on our youth who have lost elders, our parents who have lost children — they dare to use this vaccine trial as a way to clear their conscience of their inability to help their people when they had all the monetary opportunities to do so.
That means that while they were stalling on how the over 600 million dollars of the CARES Act should be spent based off of episodes of jealousy and inability to work together with the Navajo Nation Council, my grandparents who lived in a remote area of the reservation, who only spoke the Navajo language, who hauled water daily, who practiced traditional ways of knowing, died in Tucson, hundreds of miles away from the Navajo Nation because the Office of President and Vice President could not envision nor build nor repurpose a facility to take care of our people at home.
Our people are dying away from home — how will this be any different if our people have adverse reactions to this vaccine trial? As it stands now, we are flown to Phoenix, to Tucson, to Albuquerque because our IHS medical facilities (the facilities who will be administering the vaccine trials) cannot handle that kind of treatment protocol to save lives. The guilt tactic of participation in memory of those who have died is beyond inappropriate. It is unethical.
7) Facebook post: President Nez threatens us that if we don’t participate or if we wish to continue to speak out against the vaccine, that we can just plan to keep wearing a mask for forever and never returning to our old normal. In reality, having the information we are requesting readily available actually helps to reduce fear. Instead, the Office of President and Vice President are creating fear if we select to not participate. This scare tactic is not appropriate for recruitment of minority populations or otherwise.
8) Facebook post: President Nez tells us that God blesses those who participate. This particular statement came during a food distribution Live Facebook Event on Thursday September 17. As Navajo people, we do not only bless those who follow one faith or who would be vaccine trial participants, we pray for all of our people, we pray for everything.
This kind of proselytization tactics employed by both President Nez and Vice President Lizer are common fallbacks, especially when they are on the defensive. During the Town Hall Meeting on Friday, September 11th, the Office of President and Vice President quickly transitioned away from reprimanding those who were asking honest questions and commenced proselytizing with Lizer’s declarations of their appointments by God to be the leaders.
And while I have no issue with individual’s selection of religious denomination, I do have an issue when their track record reveals favoring Christian proselytizing in government-sponsored events (such as the first and second ladies' use of government funding for a ministry conference), the disregarding violations of the Office of President and Vice President’s own COVID-19 large gathering regulations committed by Christian churches (such as the large church gather at the Ganado church on the eve of our first weekend lockdown), denial of funding to the Hataali Association (such as the denied request for CARES Act funding) and the constant ignoring of traditional medicine people’s perspective of COVID-19 (translation of COVID-19 and the cultural ramification for this vaccine trial).
9) President Nez tells us to listen to the Office of President and Vice President’s Facebook page on September 21st as he goes Live in a Town Hall Meeting with Dr. Fauci if we want our questions answered about risks. There are three major concerns with this use of celebrity endorsement. Nez, who is known for his overdependence of social media spectaculars, should already know the facts surrounding the trial, especially the risks. This information should be readily available to the people. If President Nez cannot address these risks, he most definitely should not be promoting this invasive vaccine trial. Instead, he is transfering that responsibility to celebrities.
Dr. Fauci is not the Principal Investigator of this vaccine trial. Dr. Fauci is not the individual who will be administering the vaccine trial to our people nor is he the individual who stood before the Navajo Nation Human Research Review Board. Dr. Fauci is not the individual who can answer the questions we have about this vaccine trial. The media spectacle created with two individuals not connected with this particular trial creates a misleading research project for our Navajo people.
Lastly, please tell me, President Nez, how you expect Dr. Fauci to address the very real cultural consequences of plasma extraction from Navajo people? How is Dr. Fauci an expert on the traditional protocols that Navajo people can follow when going forth with this vaccine? How will Dr. Fauci diagnose and treat our people according to ceremonies and our Navajo way of life?
These avoidance and transference tactics are unethical.
10) President Nez dismisses and censures anyone who speaks up against him, who questions his course of action, and who presents to him his own clear, coherent violations of ethics. As I have stated, President Nez tells us to support the vaccine trial or to remain silent. Their tactics of silencing now include blocking the comments of individuals such as myself from posting the Office of President and Vice President’s social media platforms. I myself was blocked after asking basic questions about the consequences of the vaccine on September 17th, 2020. These dismissal and censure tactics are unacceptable for a leader.
11) Finally, President Nez and Vice President Lizer glorify this vaccine trial. The Navajo Nation’s Office of President and Vice President's resounding propaganda theme, “This is an opportunity,” resonates in my head as we still wait for answers to our very basic questions about the risks of this trial. This may be an “opportunity” but for whom and at what cost? It is clear what and who the Office of President and Vice President is willing to give up — it is their people. What is unclear is how Nez and Lizer intend to benefit.
I am not anti-clinical and I understand that this trial is “voluntary.” However, there is nothing that the Office of President and Vice President has done to build trust in their administration or in this trial that stands from an ethical point of departure. Instead of embracing questions from our youth, from our traditional Navajo people, from our community members; we are shunned, guilted, and demoralized.
The Office of President and Vice President’s approach to this study is not only belittling to the ethical researchers in the Navajo Nation and Indian Country, but is a demonstration of internal colonization — where dirty research can be produced by our own Navajo people.
As traditional leaders, Nez and Lizer are responsible for doing anything to prevent any undue harm that may besiege their people, their children. But Nez and Lizer do not lead from that perspective. They have opened the door for danger for their people, their children without providing full disclosure about this vaccine test.
Instead of leading with the potential biological and cultural dangers associated with their adamant demand that our Navajo people participate, the Office of President and Vice President rather blindly send their people, my people into a grey area filled with the propaganda of becoming a United States hero. A call that our people meet every day.
Our Navajo health professionals who save Navajo and non-Navajo lives, our servicemen and women who fight for the United States flag, our teachers and school staff who bravely return to face-to-face instruction so that our youth may grow to be better, our community members who are essential workers at gas stations, grocery stores, our students who continue to fight the challenges of distance learning and show up to learn, our Navajo people who wake up hoping for a cure to this pandemic, our elders and youth who continue to pray for not only the well-being of our Navajo people but for all that fills this universe, you show up every day and contributing to our well-being despite the all the risks.
Ahé’hee nitsáago. You do not need to be guilted, shamed, or silenced into this vaccine trial. Ask questions, know the risks biologically and culturally, and know that “voluntary” for many of our people are not always “volunteering”.
To President Nez and Vice President Lizer, learn about the details of research and how to ethically promote research. It is a question of life and death at stake..
To the Navajo Nation Human Research Review Board, there must be official ramifications for this illegal, unethical promotion of research and for the bypassing of community input.
Most importantly, ahé’hee to my Navajo community members for reading this piece, to the Navajo and Indigenous scholars, locally, nationally, and internationally who took the time to support this writing, to Delegate Carl Slater for sponsoring an early draft of this statement to the Navajo Nation Health, Education and Human Service Committee, and to my family and students who allowed for time to be taken to write this community-driven concern.
Dóone’é nishlínígíí éí Táchii’nii nishlí, Bilagáana báshíshchíín, T’ó’aheedl’ííníí dashicheii, Bilagáana dashinálí. Akót’égo Diné Asdzaan nishlí. Christine Ami dashijinii.
Dr. Christine Ami, Diné, is a Diné College Associate Professor in the School of Business and Social Sciences. She teaches Indigenous Research Methodologies, Ethnographic Methods, and Indigenous Anthropology classes. Dr. Ami is also the grant manager for the Navajo Cultural Arts Program, which is focused on the intergenerational transfer of cultural arts knowledge and skills. Dr. Ami’s can be contacted via email at firstname.lastname@example.org.