November is National Native American Heritage Month. This month is a time to celebrate the rich and diverse cultures, traditions, and histories of American Indian and Alaska Native (AI/AN) peoples, and to acknowledge their important past and present contributions to society. In honor of Native American Heritage Month, we are highlighting a few of the significant contributions that Native communities have made to research, as well as describing some of the atrocities that have occurred against Native communities within the research enterprise. Recognizing these positive and challenging moments is an important step toward building our collective understanding and ensuring the pursuit of ethical research with AI/AN individuals, Tribal Nations, and communities.
An estimated 9.7 million people in the US identify as AI/AN, representing 2.9 percent of the overall population. While these individuals represent Tribal Nations and communities with rich cultures and belief systems, the lives of AI/AN people today are heavily influenced by a history of oppression, repression, and trauma experienced since colonization of North America more than 500 years ago. AI/AN peoples’ relationships with the US medical and research enterprise has been influenced by many instances of unethical research and medical abuses. On the other hand, AI/AN individuals and Tribal Nations have made substantial contributions to public health, through their participation in research, development of research guidelines for AI/AN communities and Tribal IRBs, and knowledge of medicine and wellness practices built over many thousands of years. A number of these events and contributions are summarized below.
17th- 20th Centuries
Beginning in the 1600s, US Military doctors collected body parts from American Indian people at battle sites and army hospitals for phrenological inquiry. Phrenology is the discredited study of the conformation of the skull as indicative of mental faculties and traits of character. These practices were traumatic for American Indian people, as many Tribes believe that one cannot go into the spirit world without an intact body and that disturbed spirits will potentially cause harm to the living. Researchers also robbed graves and sacred objects during the 19th and 20th centuries.
In a 1950s study, the US Air Force’s former Arctic Aeromedical Laboratory attempted to identify the role of the thyroid gland in human acclimatization to cold weather. Over one hundred Alaska Native people (including men, women, and children) were made to ingest a radioactive isotope (Radioiodine I-131) as part of the study. Most doses exceeded the current recommended safe dosage limits. Many of the Alaska Native participants were non-English speaking individuals likely unable to provide proper informed consent, and adequate records were not retained.
The Alaska Area Specimen Bank (AASB), started in the 1960s, is an example of successful Tribal-federal collaboration. Banked biospecimens are valuable resources that can be used to understand markers of illness, determine the prevalence of a disease, and aid in the development of intervention strategies to reduce morbidity and mortality, among other uses. The AASB currently contains over 260,000 biological specimens from over 83,000 people who participated in research studies, public health investigations, and clinical testing conducted by the federal government and Alaska Native tribal health organizations dating back to the 1960s. Prior to 1997, the bank was managed by the US Centers for Disease Control and the federally-operated Indian Health Service (IHS), but when Alaska Native communities assumed responsibility for their healthcare system, the bank transitioned to oversight by a Tribal-federal partnership. The Tribal-federal partnership established for management of the AASB is an example of how collaboration can be consistent with tribal sovereignty and self-determination in areas of human health research.
In the 1970s, a controversial study of alcohol use in Barrow, Alaska stigmatized Alaska Native Tribes. Many Alaska Native people, including members of the Inupiat community, participated in the study, which was commissioned by the city. The study’s aim was to assess the role of alcohol use to facilitate the design of interventions to reduce the incidence of alcoholism in the community. Among the Inupiat’s critiques were the study’s lack of consent and the use of western standards and measures. Information about this project was leaked to major news sources prior to consultation and consent from the community, which led to stigmatization of the community and Tribe. As a result, the bond rating for the city dropped, which undermined the community’s economic development.
Over a six-year period in the 1970s that followed the passage of the Family Planning Services and Population Research Act of 1970, which is the only federal grant program dedicated to providing individuals with comprehensive family planning and related preventative health services, physicians sterilized approximately 25% of Native American women of childbearing age (and there is evidence suggesting that the numbers were actually higher). Some of these sterilization procedures were performed under pressure or duress. A report by the General Accounting Office indicated that medical consent forms were inadequate, illegally obtained, and/or not in compliance with regulations. The Act subsidized sterilizations for patients who received their health care through the IHS and for Medicaid patients. Black and Latina women were also targets of coercive sterilization in these years.
Haemophilus influenzae type b (Hib) is a bacterium that can cause severe infection, mostly in infants and children younger than five years old. The disease can be deadly or cause lifelong disability, and during the 1980s, some of the highest rates of Hib disease were reported among AI/AN populations. During this time, the Navajo Nation and the White Mountain Apache Tribe were instrumental in the development of an Hib vaccine by participating in clinical trials. As a result of this community’s critical contribution, almost every country in the world uses this Hib vaccine, and it is estimated that the vaccine has saved approximately seven million lives.
Perhaps the most well-known case of research abuse experienced by American Indians involves a study of diabetes conducted by an Arizona State University (ASU) researcher beginning in 1990. After being approached by the research team, the Havasupai Indian Tribe of Arizona agreed to participate in an ASU type 2 diabetes study. A researcher entered the reservation and drew more than 200 blood samples from Havasupai tribal members. These samples were removed from the study site without the Tribe’s knowledge or consent, stored at ASU and used for other, unrelated studies. Blood samples were also sent overseas to other researchers and their whereabouts remain unknown. This was particularly troubling to the Havasupai, as they maintain a cultural belief that all biological human material must be intact for an individual’s spirit to travel to the afterlife, making the return of the blood samples extremely important. Other ASU researchers used the samples for their work and published papers focused on inbreeding, alcoholism, and the origin and migration of the Tribe. These studies violated informed consent, and academic theories about the Tribe’s origin conflicted with their core beliefs. Years of discussion between the Tribe and the researchers about the return of the biological samples, the data, and unapproved research produced few results, so in 2004 the Tribe sued ASU, alleging lack of informed consent, violation of civil rights, and intentional or negligent infliction of emotional distress. After several years, the university agreed to return what remained of the blood samples and to settle out of court. The university formally apologized to the Havasupai and created a plan to work with the Tribe on issues of health, education, and economic development.
In May 1993, an outbreak of an unexplained pulmonary illness occurred in the southwestern United States, in the area shared by Arizona, New Mexico, Colorado and Utah known as the “Four Corners”. The CDC quickly partnered with the Navajo Nation, Navajo Nation Division of Health, and area State Departments of Health to identify the viral cause, marshal political and public health resources, determine transmission, and institute measures to prevent more infections. Unfortunately, that partnership was violated by two publications, which released names and locations within the Navajo Nation despite the community’s repeated request for privacy and anonymity. Intense sensationalist media coverage fostered widespread stigmatization of the Navajo people. The events that occurred during this time led the Navajo Nation to develop its own Research Code and establish the first Tribal IRB, the Navajo Nation Human Research Review Board.
The Indian Health Service (IHS), in conjunction with the National Institute of General Medicine Sciences and other institutes of the National Institutes of Health (NIH) first announced competitive grant applications for Native American Research Centers for Health (NARCH) in 2000. NARCH supports new and/or continuing centers or projects to develop opportunities for conducting research and research training to meet the needs of AI/AN communities. The NARCH program has been in place for over twenty years; the most recent funding opportunity was NARCH XII.
The consequences of alcohol use disorder and suicide create significant health disparities among Alaska Native people. The People Awakening project is a long-term collaboration between Alaska Native communities and university researchers seeking to reduce these disparities and develop positive solutions. The Alaska Native people proposed this research project, aiming to avoid another negative pathology study like that at Barrow, Alaska in the 1970s. The People Awakening project was scientifically successful and directly benefited the Alaska Native people by leading to an effective youth-focused, collaborative, culturally grounded and strengths-based community intervention to fight alcoholism and high suicide rates.
The Safe Passage Study is a large, prospective, multidisciplinary study designed to investigate the association between prenatal alcohol exposure, sudden infant death syndrome (SIDS), and stillbirth, and to determine the biological basis for these outcomes. This study enrolled almost 12,000 pregnant people in two geographical areas with high rates of prenatal alcohol exposure and SIDS – the US Northern Plains, which included partnerships with American Indian Tribes, and Cape Town, South Africa. Governance and scientific and ethical oversight of the Safe Passage Study was a shared responsibility of the participating research institutions and their IRBs, Tribal governments, and the Oglala Sioux Tribe Research Board, a Tribal IRB. This study was the first multi-site study of SIDS and stillbirth to integrate prospectively collected exposure information with multidisciplinary biological information. Close ties to the community and rigorous systems and processes to ensure compliance with study protocols and procedures were essential components of the study design and its success.
The Federal Policy for the Protection of Human Subjects, known as the Common Rule, is the U.S. regulation governing the use of human subjects in research. A significant revision to the Common Rule became effective in 2018, and importantly includes language specifying that federally-funded researchers are required to follow Tribal research laws in addition to the federal regulations. Tribes can develop laws to ensure research benefits and protections beyond the individual protections required by federal research policies. New federal requirements for single IRB review in multi-site studies allow for exemptions when Tribal law requires local review. Overall, these changes to the Common Rule have contributed positive progress concerning recognition of Tribal sovereignty and authority over research activities on Tribal lands and with Tribal citizens.
The timeline above highlights just a few examples of the rich and complex history of AI/AN peoples’ experience and contributions to the research enterprise. To learn more, we encourage you to check out the references and resources below.
For more information about Tribal Nations in the US, see the National Congress of American Indian’s resource Tribal Nations & the United States: An Introduction.
Deana Around Him, DrPH, is a citizen of the Cherokee Nation and senior research scientist at Child Trends. Her research aims to improve the well-being of American Indian and Alaska Native (AIAN) children, youth, and families through approaches that meet the cultural and contextual needs of their communities. Around Him’s training focused on the social determinants and life course approaches to health, culturally responsive evaluation, research ethics, and maternal and child health. She has worked with centers that focus on strengthening tribal research capacity and policies. Around Him strives to conduct research and evaluation that respects tribal sovereignty, builds on cultural strengths, and produces outcomes that inform policy and programs.
Olivia Forman is the Education Program Coordinator at PRIM&R.
Sharon Shriver, PhD, is the Director of Programs at PRIM&R.
Allen, J., Mohatt, G. V., Beehler, S., & Rowe, H. L. (2014). People awakening: Collaborative research to develop cultural strategies for Prevention in Community Intervention. American journal of community psychology. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4119558/.
Bankert, E. A., Gordon, B. G., Hurley, E. A., & Shriver, S. P. (2021). Institutional Review Board: Management and Function, third edition. Jones & Bartlett Learning.
Belcourt, A., Kelley, A., & Belcourt, C. (2014). American Indian and Alaska native research ethics ... Research Gate. Retrieved from https://www.researchgate.net/publication/266786410_American_Indian_and_Alaska_Native_research_ethics_The_emergence_of_tribal_review_boards.
Centers for Disease Control and Prevention. (2021). American Indian & Alaska native contributions to public health. Centers for Disease Control and Prevention. Retrieved from https://www.cdc.gov/tribal/tribes-organizations-health/contributions/index.html.
Demographics. National Congress of American Indians. (2020). Retrieved from https://www.ncai.org/about-tribes/demographics.
Dukes, K. A., Burd, L., Elliott, A. J., Fifer, W. P., Folkerth, R. D., Hankins, G. D. V., Hereld, D., Hoffman, H. J., Myers, M. M., Odendaal, H. J., Signore, C., Sullivan, L. M., Willinger, M., Wright, C., Kinney, H. C., & PASS Research Network. (2014). The Safe Passage Study: Design, methods, recruitment, and follow-up approach. Paediatric and perinatal epidemiology. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4286367/.
Hodge, F. S. (2012).No meaningful apology for American Indian unethical research abuses. ResearchGate. Retrieved from https://www.researchgate.net/publication/259439587_No_Meaningful_Apology_for_American_Indian_Unethical_Research_Abuses.
Indian Country Today. (2021). 2020 census: Native population increased by 86.5 percent. Indian Country Today. Retrieved from https://indiancountrytoday.com/news/2020-census-native-population-increased-by-86-5-percent.
Native American Research Centers for Health (NARCH) grants. (n.d.). Retrieved from https://www.federalregister.gov/documents/2008/12/22/E8-30300/native-american-research-centers-for-health-narch-grants.
Pacheco, C. M., Daley, S. M., Brown, T., Filippi, M., Greiner, K. A., & Daley, C. M. (2013). Moving forward: Breaking the cycle of mistrust between American Indians and researchers. American journal of public health. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3828980/.
Parkinson, A. J., Hennessy, T., Bulkow, L., & Smith, H. S. (2013). The Alaska Area Specimen Bank: A tribal-federal partnership to maintain and manage a resource for Health Research. International journal of circumpolar health. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3629262/.
Research policy update - NCAI. (n.d.). Retrieved from https://www.ncai.org/policy-research-center/research-data/prc-publications/ResearchPolicyUpdate.pdf.
Sterling, R. L. (2011). Genetic research among the Havasupai: A cautionary tale. Journal of Ethics | American Medical Association. Retrieved from https://journalofethics.ama-assn.org/article/genetic-research-among-havasupai-cautionary-tale/2011-02.
Theobald, B. (2019, December 5). The Native American Women Who Fought Mass Sterilization. Time. Retrieved from https://time.com/5737080/native-american-sterilization-history/.