ArticlePDF Available

No Meaningful Apology for American Indian Unethical Research Abuses

Authors:

Abstract

This article reviews the history of medical and research abuses experienced by American Indians since European colonization. This article examines the unethical research of American Indians/Alaska Natives in light of the Tuskegee Study of Untreated Syphilis in the Negro Male. Literature citations indicate that significant unethical research and medical care incidents occurred both before and after the Tuskegee Syphilis Study among American Indians/Alaska Natives. The majority of these unethical abuses were committed by the federal government and within the historical context of a long-term contentious relationship between American Indians and the federal government. Although President Clinton issued a highly visible public apology to the African American survivors of the Tuskegee syphilis experiment in 1997, American Indians have yet to experience such visible federal acknowledgment. To ensure ethical research in which benefits outweigh risks and findings are not value-laden or misrepresented, tribes have instituted their own Institutional Review Boards coupled with community-participatory activities.
This article was downloaded by: [University of California, Los Angeles (UCLA)]
On: 18 December 2012, At: 08:51
Publisher: Routledge
Informa Ltd Registered in England and Wales Registered Number: 1072954 Registered
office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK
Ethics & Behavior
Publication details, including instructions for authors and
subscription information:
http://www.tandfonline.com/loi/hebh20
No Meaningful Apology for American
Indian Unethical Research Abuses
Felicia Schanche Hodge a
a Health Promotion Services, UCLA School of Nursing Health
Services, UCLA School of Public Health Center for American Indian/
Indigenous Research and Education
Accepted author version posted online: 23 Oct 2012.Version of
record first published: 28 Nov 2012.
To cite this article: Felicia Schanche Hodge (2012): No Meaningful Apology for American Indian
Unethical Research Abuses, Ethics & Behavior, 22:6, 431-444
To link to this article: http://dx.doi.org/10.1080/10508422.2012.730788
PLEASE SCROLL DOWN FOR ARTICLE
Full terms and conditions of use: http://www.tandfonline.com/page/terms-and-conditions
This article may be used for research, teaching, and private study purposes. Any
substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing,
systematic supply, or distribution in any form to anyone is expressly forbidden.
The publisher does not give any warranty express or implied or make any representation
that the contents will be complete or accurate or up to date. The accuracy of any
instructions, formulae, and drug doses should be independently verified with primary
sources. The publisher shall not be liable for any loss, actions, claims, proceedings,
demand, or costs or damages whatsoever or howsoever caused arising directly or
indirectly in connection with or arising out of the use of this material.
ETHICS & BEHAVIOR, 22(6), 431–444
Copyright © 2012 Taylor & Francis Group, LLC
ISSN: 1050-8422 print / 1532-7019 online
DOI: 10.1080/10508422.2012.730788
No Meaningful Apology for American Indian
Unethical Research Abuses
Felicia Schanche Hodge
Health Promotion Services, UCLA School of Nursing Health Services, UCLA School of Public
Health Center for American Indian/Indigenous Research and Education
This article reviews the history of medical and research abuses experienced by American Indians since
European colonization. This article examines the unethical research of American Indians/Alaska
Natives in light of the Tuskegee Study of Untreated Syphilis in the Negro Male. Literature cita-
tions indicate that significant unethical research and medical care incidents occurred both before and
after the Tuskegee Syphilis Study among American Indians/Alaska Natives. The majority of these
unethical abuses were committed by the federal government and within the historical context of a
long-term contentious relationship between American Indians and the federal government. Although
President Clinton issued a highly visible public apology to the African American survivors of the
Tuskegee syphilis experiment in 1997, American Indians have yet to experience such visible federal
acknowledgment. To ensure ethical research in which benefits outweigh risks and findings are not
value-laden or misrepresented, tribes have instituted their own Institutional Review Boards coupled
with community-participatory activities.
Keywords: American Indians, Legacy of Tuskegee Syphilis Experiment, research distrust, bioethics,
minority participation in research, Tribal IRB
INTRODUCTION
The Tuskegee Study of Untreated Syphilis in the Negro Male (1932–1972) could have been a
story of American Indian/Alaska Native research abuses. As in the Tuskegee Syphilis Study,
research with American Indian/Alaska Native populations was generally implemented by gov-
ernmental researchers with the aid of a trusted member of the community, often an indigenous
nurse or elder recruited participants who acted as translators (Foulks, 1989; National Research
Council, 1996). Much like research in the Tuskegee Study of Untreated Syphilis in the Negro
Male, harm outweighed benefit, producing great damage to American Indian participants, their
families, and community/tribes. American Indians/Alaska Natives and the Tuskegee Study of
Untreated Syphilis in the Negro Male participants share a troubling history of scientific racism
that has led to multiple research abuses; violations of basic human rights; and, in some cases,
genocidal tactics against American Indians (Stiffarm & Lane, 1992; Thornton, 1987).
Correspondence should be addressed to Felicia Schanche Hodge, UCLA School of Nursing, 700 Tiverton Avenue,
5-940 Factor Building, Los Angeles, CA 90095. E-mail: fhodge@sonnet.ucla.edu
Downloaded by [University of California, Los Angeles (UCLA)] at 08:51 18 December 2012
432 SCHANCHE HODGE
Given the lengthy history of these unethical abuses, it is not surprising that distrust of research
and reluctance to participate in research studies have evolved over the years among indigenous
groups. Multiple research insults occurred before and after the Tuskegee Syphilis Study, occur-
ring within a historical context of a long-term, contentious relationship between tribes and the
federal government. Concern over these abuses has given birth to tools and methods designed to
control research and to protect individual American Indians/Alaskan Natives and the collective
tribal communities. Tribes have taken advantage of legislation and other tools to advance control
over research, thereby protecting their tribal members and community from the potential research
abuses. Since President Clinton’s Apology 15 years ago to the Tuskegee Study participants, the
lack of a direct apology to tribes that have endured a lengthy history of medical and research
abuses at the hands of the federal government has become apparent. This article traces the history
of medical and research abuse experienced by American Indians/Alaskan Natives through an
examination of some of the most egregious and well-documented cases of abuse and illustrates
the approaches that tribes have undertaken in response to these abuses.
MEDICAL ABUSES EXPERIENCED BY AMERICAN INDIANS
The lives of today’s American Indians are influenced by a history of oppression, repression,
and intergenerational trauma experienced since Europeans colonized North America more than
500 years ago (Braveheart & DeBruyn, 1998; O’Nell, 1994). From the beginning of coloniza-
tion, there was little room for the indigenous population in the plans of European newcomers.
Military campaigns and assimilation efforts were responsible for destruction of tribal struc-
tures and dramatic population losses for American Indians. But it was the lack of immunity
to the diseases that accompanied European colonizers and their rapid and sometimes deliberate
introduction into American Indian communities that proved to be the most damaging. A well-
known example occurred during the French and Indian War of 1756 to 1763 when the British
military commanders advised that small-pox-infected blankets be distributed among American
Indian communities as a means to “Extirpate this Execrable Race” (Parkman, 1994; Patterson &
Runge, 2002). In other regions, small pox eliminated half the Huron and Iroquois confederations
(Duffy, 1951), half the Cherokees and Catawbas (Duffy, 1951), and two thirds of the Omahas
(Stearn & Stearn, 1945). The subsequent spreading of whooping cough, influenza, tuberculo-
sis, and pneumonia decimated the American Indian population and brought numerous tribes to
the brink of extinction (Crosby, 1976; Thornton, 2000). In addition to disease, the health sta-
tus of many American Indians was threatened by rotting meat and bug-infested food supplies
that were distributed with rank drinking water at forced and guarded military encampments with
poor sanitation. These encampments became reservations (Berzok, 2005). By the turn of the 20th
century, the American Indian population, estimated to number in the millions before the arrival
of Europeans, was reduced to a paltry 120,000 in the contiguous United States—a significant
reduction that threatened the extinction of all tribes (Thornton, 1987).
As diseases continued to devastate tribal communities, many abusive medical practices were
documented (Meriam, 1928). Government doctors stationed at military sites (where most reser-
vations were located) practiced on Indians with impunity. Trachoma, an infectious eye disease,
became a serious health threat in 1897, particularly with the influx of immigrants to the United
States. In the 1900s, rates of infection were high in the “Trachoma Belt” stretching from Virginia
Downloaded by [University of California, Los Angeles (UCLA)] at 08:51 18 December 2012
UNETHICAL ABUSES IN AMERICAN INDIAN RESEARCH 433
to Oklahoma, and the prevalence of trachoma reached 90% on some American Indian reserva-
tions (Edwards, 1998; McMullen, 1917). To treat trachoma, Indian Health Service (IHS) doctors
surgically removed the upper and lower eyelids of men, women and children, “a serious radi-
cal operation” called a tarsectomy (Allen & Semba, 2002), a supposed cure, “without carefully
watching results and checking the degree of success achieved” (Meriam, 1928, p. 11). Although
trachoma was epidemic throughout the world at various times, treatments in past years included
bloodletting (cuts to the eyelids), rupturing of the granules, and various eyewashes. The more
serious procedure used on American Indians (removal of the eyelids) was radical and not widely
used on other populations. Tarsectomy was used from the 1900s to 1930s as a treatment, as well
as a preventative measure on nonsymptomatic individuals in several American Indian communi-
ties. This disfiguring and untested medical procedure continued until sulfa drugs were discovered
in the 1930s. (Thygeson, 1939).
Perhaps among the most traumatizing and illegal of assaults was the sterilization of American
Indian women and girls without their knowledge or consent. American Indians were targeted for
this extreme form of family planning due to their high birth rate compared to other populations
(Lawrence, 2000). In the 1970s, rumors were circulating about American Indian females undergo-
ing sterilization (tubal ligations and hysterectomies) at the hands of the federal IHS. Complaints
by an American Indian physician to the federal government resulted in a study by the General
Accounting Office (Carpio, 2004; Torpy, 2000). The General Accounting Office reported that
3,406 American Indian females between the ages of 15 and 44 who received healthcare services
in four of the 12 IHS regions were sterilized by IHS doctors or IHS “contract” doctors between
1973 and 1976 (Chicago Committee to End Sterilization Abuse, 1977; Comptroller General of
the United States, 1976). This report indicates that the medical consent forms were inadequate,
illegally obtained, and not in compliance with IHS regulations. For instance, it is reported that
36 women younger than 21 had been sterilized from 1973 to 1976 despite a court-ordered mora-
torium on sterilizations of women younger than 21 (Comptroller General of the United States,
1976). It was reported that physicians obtained “verbal consent” for sterilization, and in many
cases coercion was evident, as women were reportedly led to believe that they “would lose BIA
[Bureau of Indian Affairs] benefits, access to services, or custody over their other children if
they refused to do the procedure ...and IHS personnel did not correct this perception” (Rutecki,
2011).
It was the practice of the IHS to contract out to non-IHS physicians when healthcare services
were not available at local reservations. Over the period of 1972 to 1976 the IHS reimbursed
fully or at a rate of 90% for sterilizations compared to less than one half for abortions (U.S.
Department of Health, Education and Welfare, 1978). Many American Indian women were ster-
ilized following childbirth or during another procedure (such as appendectomy). At least two
15-year-old girls awoke from what they believed to be surgeries removing their tonsils to find
that their ovaries had been excised instead. Compensation, explanations, or corrective action by
the IHS to the victimized individuals and their families were never obtained (Rutecki, 2011).
A 1973 study conducted by the Health Research Group, as well as interviews with physi-
cians who carried out sterilizations on American Indian women, reveals the troubling reasoning
behind the practice (Rosenfeld, Wolfe, & McGarrah, 1973). Aside from the physicians’ views
that this practice helped society through population control and reducing racial/ethnic tensions,
they reasoned that it reduced the financial burden on government social programs and lessened
their personal tax burden to support social programs. In addition, American Indian women,
Downloaded by [University of California, Los Angeles (UCLA)] at 08:51 18 December 2012
434 SCHANCHE HODGE
they reasoned, were not intelligent enough to effectively use birth control methods, and fur-
ther, the procedure allowed physicians to gain more specialization in gynecology and obstetrics
(Lawrence, 2000). The federal government has been legally and morally entrusted with safe-
guarding the health and welfare of American Indian tribes (Cherokee Nation v. Georgia, 1930).
The same ill-guided views that allowed the federal government to breach its trust responsibility
in medical care also permitted abuses in the research domain.
RESEARCH ABUSES EXPERIENCED BY AMERICAN INDIANS
Long before the Tuskegee Study, American Indians/Alaska Natives were subjects of research that
was often supported by pseudoscientific methods, resulting in risk to health and disfigurement,
and running contrary to cultural beliefs and practices. For instance, in the 17th and 18th cen-
turies, military doctors collected American Indian body parts from battlesites and army hospitals
for phrenological purposes, a pseudoscientific study of the shape and protuberances of the skull
in the discredited belief that skulls could reveal character and mental capacity (Thomas, 2000).
These practices were traumatic, as many tribes believe one cannot go into the spirit world with-
out an intact body, or that disturbed spirits will potentially cause harm to the living (Gulliford,
1996; Riding In, 1996; Thomas, 2000). Disposal or reburial of the body parts from the desecrated
gravesites was never reported.
In a 1950s study, the U.S. Air Force’s former Arctic Aeromedical Laboratory attempted to
identify the role of the thyroid gland in human acclimatization to cold weather. With the assistance
of Native elders, Alaska Natives were recruited into the study, which entailed ingesting a radioac-
tive isotopic (National Research Council, 1996; Shore, 1989). Radioactive Iodine (Iodine131), also
called Radioiodine I-131, an isotope of iodine that emits radiation, was given to Alaska Natives
as a part of the study. Generally used for medical purposes (such as a treatment for an overactive
thyroid), when ingested I-131 is absorbed in the bloodstream and then concentrates in the thyroid,
where it destroys the gland’s cells. Two hundred doses of the radioisotope Iodine131 were admin-
istered to 120 Alaska Natives and Eskimos (men, women, and children) residing in villages in the
northern and central portions of Alaska. Most doses were 50 microcuries, which exceed the cur-
rent recommended dosage limits for such use as cancer screening purposes (Advisory Committee
on Human Radiation Experiments, 1995). Current standards for safely ingesting Iodine131, which
are more restrictive than the standards used in the 1950s, would preclude use of minors, lac-
tating women, and potentially pregnant women; however, subjects in these categories were not
excluded. Many of the Alaskan subjects were non-English-speaking individuals and children,
who were unable to provide proper consent at the time. Adequate records, such as participant
demographic characteristics, residence, date and per-person amount of iodine dosage, pregnancy
status, consenting of individuals or guardians of children were not obtained or retained. Medical
follow-up for iodine exposure health risk assessments of the subjects and their offspring is there-
fore not possible. In additions, records detailing methods and procedures used that would ensure
that coercive tactics were not employed in the recruitment and retention of subjects were not col-
lected. It is speculated that the villagers believed they were trading their participation for much
needed medical treatment in their rural villages (Shore, 1989).
In the 1970s, controversial studies continued to abuse and stigmatize tribes. Inupiat natives
of Barrows, Alaska, age 15 and older participated in a study of alcohol use (Foulks, 1989).
Downloaded by [University of California, Los Angeles (UCLA)] at 08:51 18 December 2012
UNETHICAL ABUSES IN AMERICAN INDIAN RESEARCH 435
Commissioned by the city’s Department of Public Safety, the study’s aim was to assess the role
of alcohol use in traumatic deaths to facilitate the design of beneficial interventions for the com-
munity. Among the charges levied against the study by Inupiat critics were the study’s lack of
proper consenting of Native youth and adults and the use of “Western, lower-48” standards and
measures on the Inupiat society (Foulks, 1989). The sensational “findings” were leaked to a major
news source prior to consultation with the studied community (Wolf, 1989). As a result of the
negative media portrayal of Barrow, the bond rating for the city dropped, undermining economic
development (Noe et al., 2006).
In a special edition of the National Journal (Manson, 1989), several researchers assessed the
implementation of the Barrows study and the resulting conflict between the community and
researchers. Beauvais (1989) noted that the “one-dimensional model” focus, coupled with the
complete lack of Inupiat participation in the research (although a Native steering committee was
convened in the later stages of the research), led to the ill-fated results of the study. These results
highlighted the problem of alcohol consumption and subsequent health and social problems expe-
rienced by the Inupiat community members instead of focusing on intervention options targeting
traumatic deaths (due to accidents and hyperthermia). Further, the report was published widely to
the non-Indian communities without the opportunity for the Native group to review and respond
to its validity or comment on its potential harm by stigmatizing the community. Westermeyer
(1989) addressed the stumbling blocks faced by researching stigmatizing conditions stating that
research cannot be guided by the funders and that if the research is important, someone will
either be disturbed or enraged. Wolf (1989), however, reminded the reader that the research has
had some impact as a number of Alaskan communities (including Barrow) have voted to become
“dry” communities to reduce the effects of heavy drinking. These communities have noticed a
marked decrease in both violence and drinking.
In the 1990s and shortly after the turn of the 21st century, tribes were given additional rea-
sons for distrusting research and researchers. Although the Tuskegee Syphilis Study and the
Belmont Report (guidelines for the protection of human subjects in research) aid the groundwork
for Institutional Review Boards (IRBs), which enforce protections for human research subjects,
research abuses continued. University IRBs were in force when the Havasupai Indian tribe of
Arizona agreed in 1990 to participate in an Arizona State University (ASU) type 2 diabetes study
(Couzin-Frankel, 2010). A researcher entered the reservation and drew more than 200 blood
samples from Havasupai members. These samples were removed from the study site at Havasupai
without the tribe’s knowledge, stored at ASU, and used for other non-diabetes-related studies (and
non-IRB-approved studies), such as the genetic basis of schizophrenia and inbreeding (Dalton,
2004; Mello & Wolf, 2010; Santos, 2008; Sterling, 2011). Numerous publications were produced
and a doctoral thesis resulted (Caplan & Moreno, 2010; Rimmer, 2007). Blood samples were
sent overseas to other researchers and their whereabouts remain unknown. This was particularly
troubling to the tribe, as their cultural belief is that all biological human material must be intact
in order for an individual’s spirit to travel to the afterlife, making the return of the blood sam-
ples extremely important to the Havasupai (Drabak-Syed, 2010). ASU had promised to return the
sample as part of their original research agreement.
Years of discussions the about return of the biological samples, the data, and the unapproved
research between the tribe and the university produced few results, so the tribe sued ASU in
2004 alleging fraud, breach of fiduciary duty, negligence, and trespass (Potkonjak, 2004). After
several years, the college agreed to return what remained of the blood samples and to settle out of
Downloaded by [University of California, Los Angeles (UCLA)] at 08:51 18 December 2012
436 SCHANCHE HODGE
court. The Principal Investigator of the study was fired for operating a lax research program. ASU
formally apologized to the Havasupai and set out a plan to work with the tribe on issues of health,
education, and economic development. The results of these promises are yet to be determined
(Gulliford, 1996).
Meanwhile, the student researcher who received a doctoral degree for a dissertation on the
Havasupai data subsequently obtained a faculty position at a large university. No publications
based on research using the samples were withdrawn from peer-reviewed journals. The Havasupai
case illustrates that even though changes have been made to promote ethical research practices
since the Tuskegee Study and implementation of the Belmont Report, there is still a need for
tribes to monitor research and assure the mutually beneficial nature of their collaborations with
researchers, federal and otherwise (as even respected academic institutions have caused abuse).
SELF-DETERMINATION AND AMERICAN INDIANS
Since the Tuskegee Study, policies and laws have been enacted to support American Indian con-
trol of healthcare, social services, education, and research. The most seminal piece was the federal
Indian Self-Determination and Education Assistance Act of 1975 (Public Law 93–638). It was
a reaction to federal efforts to assimilate tribes into Western society and to terminate tribes as
sovereign nations and eliminate federal responsibility for the health and welfare of American
Indians. Termination would have meant the end of all treaties and the end of the recognition of
tribes as sovereign entities. Self-determination gives tribes the ability to make choices in their
future, to run programs, which in essence is the determination of their destiny and direction. The
Act encouraged “maximum Indian participation in the government and education of the Indian
people” (Cornell, 1984, p. 53). Tribes now had the authority to negotiate contracts, administer
their own education and social service programs, and participate on school boards. Later amend-
ments provided direct grants to help tribes develop plans to assume responsibility for federal
programs (Dean & Webster, 2000), thus tribes have the ability to assume the implementation and
management of various grants and programs previously headed by federal officials. These grants
and programs include health care clinics, dental clinics, training and education programs, and
support services (Glazer, 2004).
In the 1980s and 1990s, amendments to the Indian Self-Determination and Education
Assistance Act provided for tribal self-governance, thereby launching tools and approaches to
regulate research. In 1995, the Navajo Nation became the first tribe to establish its own IRB
(Brugge & Missaghian, 2006). Tribes and urban Indian organizations have since developed
IRB research training programs for Indian and non-Indian researchers (Research Ethnics and
Institutional Review Board (IRB) Resources for Tribes and Researchers, 2005). Some tribal IRBs
enforce additional conditions that the researcher provides progress reports, a final report, presen-
tation at an annual conference and community feedback at the conclusion of the study and prior
to publication (Maldonado, n.d.). This is important, as failure to organize research in a collab-
orative fashion often results in published data that are not trusted as authentic and is viewed as
not valuable by the community (Mohatt & Thomas, 2005). Failure to organize research in a col-
laborative fashion often results in published data that are viewed as useless by the community,
therefore leaving them with little benefit (Mohatt & Thomas, 2005). Additional requirements
can be instituted; for instance, the Navajo Nation Health Research Review Board can require
Downloaded by [University of California, Los Angeles (UCLA)] at 08:51 18 December 2012
UNETHICAL ABUSES IN AMERICAN INDIAN RESEARCH 437
the employment of tribal members who are subject to their labor laws, assert ownership over all
equipment used in the research at the conclusion of the research, and oversight and ownership of
the data specific to its members (Manson, 2004). The Cherokee Nation of Oklahoma, on the other
hand, can require that the investigator spend a couple of weeks at the tribal healthcare clinic prior
to the start of the research (Manson, 2004), further underscoring the right of American Indian
communities to govern themselves. Tribally controlled and operated IRBs and research commit-
tees have rapidly become a reality with many tribes across the nation who either develop their
own IRBs or coordinate the placement of multitribal IRBs in Indian organizations, tribal colleges,
or at local Indian clinics (Aberdeen Area Tribal Chairmen’s Health Board, 2005).
An important distinction of Tribal IRBs is the attention and inclusion afforded to tribes as
a collective society. Where university or governmental IRBs focus on the individual with steps
designed to protect the individual study subject, Tribal IRBs extend this protection to groups,
such as tribes, clans, urban Indian cohorts, and special groups, such as healers, elders, and chil-
dren. As a collective society, American Indians place emphasis on responsibility within the
family, community, and the tribe (Harrison, Wilson, Pine, Chan, & Buriel, 1990). Tribal iden-
tity is formidable and is identifiable in language, clothing, ceremonies, and place (reservation or
region). Perceptions may be influenced by tribal identity, and research groupings and measures
need to take these cultural factors into consideration (Brugge & Missaghian, 2006).
Community-Based Participatory Research (CBPR), a process that encourages targeted
research communities to participate in the development, implementation, and evaluation of
research (Minkler, 2005; Trimble, Scharron-del Rio, & Bernal, 2010), has recently been imple-
mented in tribal communities. However, difficulties in the design and implementation of CBPR
in American Indian communities have arisen. Mohatt and Thomas (2005) emphasized the need
for researchers to understand the influence of culture in the formulation of research ques-
tions, methods, and interpretation. Wallerstein and Duran (2010) and others (Christopher, Watts,
McCormick, & Young, 2008; Fisher & Ball, 2003, 2005) have discussed key challenges for
American Indian equal participation in the CBPR process: (a) translating research findings to
populations who may have high variability in culture, resources, organizational factors, and
research acceptance; (b) listening to and incorporating cultural practices, beliefs, and theories;
(c) translating language, which includes “incompatible discourse between the academy and the
community,” and the use such powerful research terms as “institutionalization” or “collabora-
tors” that may trigger “resistance and historical memories of assimilationist policies or betrayal”
(Wallerstein & Duran, 2010); (d) control of the research process by academics that may impose
research prescriptions or employ tactics to increase minority enrollment; (5) insufficient attention
to implementation within the organizational culture and lack of resources as a barrier; and (6) lack
of trust between researchers and underrepresented communities.
Community-Based Participatory Research, as operationalized by American Indian communi-
ties, means that tribes are equal partners, participating fully in the identification of the problem,
the research design, the selection of measures, subjects and findings. As American Indians are
a collective society whose decisions are made by the group or by elders, and not on an indi-
vidual basis, this dynamic is an important cultural process to consider in designing research.
One or more individuals may be selected from the community to provide representation on an
advisory board; however, the equal participation of both parties may be compromised in cases
where the American Indian individual whom the researchers have selected is not an acceptable
choice to the community. Indeed, the researcher may feel ownership of the research, data, and
Downloaded by [University of California, Los Angeles (UCLA)] at 08:51 18 December 2012
438 SCHANCHE HODGE
resulting reports. Too little consideration is given to a culture that operates and views the world
as a collective society.
Community involvement in research can present in several forms. For many American Indians
and Alaska Natives, participatory research has taken the form of partnerships, contracts, or
consultancy with tribal advisory councils, and tribal council stewardship. Indeed, tribes are
(a) beginning to assert ownership over research data, voice their interpretation of research find-
ings, and control publications by guiding publication topics, and (b) having the authority to
approve or disapprove publications (Maldonado, n.d.). Ensuring that interpretation of the research
data reflects the tribal culture and that value-laden measures are not used or reported are impor-
tant functions of Tribal IRBs and CBPRs. In addition, many tribes are starting to require that
research teams provide training workshops/meetings in the tribal community prior, during and
after the research (Maldonado, n.d.; Navajo Human Research Review Board, 2007). These work-
shops provide some interaction with the community and help to educate members on various
research topics. Videos and publications on the history of the tribe or the urban community may
be exchanged so that the research team can expand their knowledge and understanding of the
tribal culture and community.
DISTRUST OF RESEARCH AND RESEARCHERS
The history of medical abuses left scars among American Indians that were never fully healed.
Western medical providers and researchers continue to be uninformed of American Indian cul-
tural constructs of illnesses and the need to observe customs and traditions. For instance, many are
unaware of the need for the return of body parts, so that the individual can pass into the next world
whole, as is the custom for many tribes (Riding In, 1996). Further, tribes may not approve of stud-
ies (or complete the consenting process) that contradict their origin beliefs. Research on sensitive
topics, such as genetic studies or DNA analysis, is often rejected, as most tribes have origin sto-
ries as to where they came from and how they were created that contradict scientific studies that
base their findings on DNA or genetic studies (Maldonado, n.d.; Sterling, 2011). Origin stories
have been told and retold through generations and are an important part of tribal traditions, cer-
emonies, and myths; their veracity may be brought into question by research findings. Research
to examine tribal origins is often denied by Tribal IRBs as it is seen as threatening to tribes and
not of benefit to tribal members (Harmon, 2010). In addition, research on psychological issues,
such as depression, mental illness, and the use of certain substances, is controversial, as differ-
ences in definitions, the cultural constructs of measures, and the value-laden interpretation of
results can be problematic (Kinzie & Manson, 1987; Trimble et al., 2010), leading to stigmati-
zation of the community and its members (Foulks, 1989). Also, words such as “depressed” and
“anxious” can be absent from some American Indian and Alaska Native languages (Manson,
Shore, & Bloom, 1985), making study of these issues sensitive. In addition, the importance of
addressing the intersection of gender and culture in research cannot be ignored in order to protect
the research findings from being interpreted from the dominant, male-centric perspective (Reid,
2002).
Researchers targeting American Indian populations must be cognizant of the restrictions they
face in designing and conducting their research. Although many may question the potential loss
Downloaded by [University of California, Los Angeles (UCLA)] at 08:51 18 December 2012
UNETHICAL ABUSES IN AMERICAN INDIAN RESEARCH 439
of research knowledge and benefit to American Indian communities/tribes when DNA and stud-
ies of origin are restricted, however, the value tribes place on culture and identity, past experience
with harmful research, and their concern over the use of value-laden measures that are inappro-
priately used compel many to urge researchers to better understand these issues and to design
research appropriately. The rights of tribes to approve or disapprove research must be honored
given past abuses and concern over poorly designed research. This does not mean that all research
on origin and DNA are restricted, as tribes have maintained the right to selectively approve and
to participate in research that they deem valuable.
Distrust of research and of researchers have colored the American Indian perspective of
research; however, by placing research within the control and supervision of tribes (through
tribally controlled IRBs and research committees), research can be developed to truly benefit
tribes and society at large. Tribal IRBs require respect from researchers, as they must demon-
strate an understanding of the research subjects’/community’s culture(s), and they may also
require that benefits would outweigh the risks of research (Maldonado, n.d.) and comply with
review and approval/disapproval of research measures (Aberdeen Area Tribal Chairmen’s Health
Board, 2012). In addition, tribes have the opportunity to require community-wide presentations
of findings through oral and written reports and as well as workshops or training sessions on
some aspects of the study. Prior approval of research findings and publications that report par-
ticipating tribes by name or give an accounting on study subjects or community can be denied
(Burhansstipanov, Christopher, & Schumaker, 2005; Christopher, 2005) because of privacy con-
cerns. Generally, tribal approval or disapproval of publications is required before final publication
in a research journal.
Tribal IRBs have the full strength of the law because tribes are sovereign nations with special
rights that enable them to set a course for self-determination. The use and ownership of data,
findings, and products of research may be held under the purview of the tribe (Burhansstipanov
et al., 2005; Christopher, 2005). Inclusion of authorship may also be a requirement, especially
if tribal members work on the research project or provide sustentative input or analysis, such as
translation of focus group recordings, validation of research interpretation, and coding or data
analysis.
IS AN APOLOGY REAL IF IT IS NOT PRESENTED TO TRIBES?
In 1997, President Clinton issued an apology to the African American survivors of the Tuskegee
Syphilis Study for the abuses they suffered (Capriccioso, 2010). President Ronald Reagan also
made a formal statement when he signed the Japanese Internment Apology law in 1988, which
carried with it financial restitution (Capriccioso, 2010). Indeed, President Obama recently called
his Guatemalan counterpart to apologize for the 1946–48 research study conducted by U.S.
researchers in which people in Guatemala were intentionally infected with sexually transmitted
diseases to test the effectiveness of penicillin (“U.S. Apologizes,” 2010). Yet no apology of sig-
nificance has been offered to American Indians and Alaska Natives for past research abuses other
than a weak statement buried in a defense appropriations spending bill in 2009. The Apology
Resolution was included as Section 8113 in the 2010 Defense Appropriations Act, H.R. 3326,
Public Law No.111-118, and reads as follows:
Downloaded by [University of California, Los Angeles (UCLA)] at 08:51 18 December 2012
440 SCHANCHE HODGE
H.R. 3326, PUBLIC LAW 111–118—DEC. 19, 2009 123 STAT. 3409 123 STAT. 3454 – Section 8113
APOLOGY TO NATIVE PEOPLES OF THE UNITED STATES SEC. 8113.
(a). ACKNOWLEDGMENT AND APOLOGY.
—The United States, acting through Congress—
1. recognizes the special legal and political relationship Indian tribes have with the United
States and the solemn covenant with the land we share;
2. commends and honors Native Peoples for the thousands of years that they have stewarded
and protected this land;
3. recognizes that there have been years of official depredations, ill-conceived policies, and
the breaking of covenants by the Federal Government regarding Indian tribes;
4. apologizes on behalf of the people of the United States to all Native Peoples for the many
instances of violence, maltreatment, and neglect inflicted on Native Peoples by citizens
of the United States;
5. expresses its regret for the ramifications of former wrongs and its commitment to build
on the positive relationships of the past and present to move toward a brighter future
where all the people of this land live reconciled as brothers and sisters, and harmoniously
steward and protect this land together;
6. urges the President to acknowledge the wrongs of the United States against Indian tribes
in the history of the United States in order to bring healing to this land; and
7. commends the State governments that have begun reconciliation efforts with recognized
Indian tribes located in their boundaries and encourages all State governments similarly
to work toward reconciling relationships with Indian tribes within their boundaries.
(b). DISCLAIMER.—Nothing in this section—
1. authorizes or supports any claim against the United States; or
2. serves as a settlement of any claim against the United States.
The resolution does not specify medical or research abuses; it simply states regret for many
wrongs and apologizes for many instances of violence, maltreatment, and neglect. These words,
however, are lost in the volumes of a defense-spending bill. Of note are the two statements that
follow this “apology” serving as a disclaimer, that “nothing in this section (1) authorizes or sup-
ports any claim against the United States; or (2) serves as a settlement of any claim against the
United States.” Few Americans are aware of this resolution because a formal apology was not
voiced, presented, or disseminated to American Indians.
Other countries have issued strong, extensively disseminated apologies for travesties against
their indigenous groups. In June 2008, Canadian prime minister Stephen Harper gave a widely
published speech apologizing to Native survivors of the country’s residential boarding school sys-
tem (Capriccioso, 2010). Prior to that, the Australian prime minister Kevin Rudd apologized to all
aboriginals for laws and policies that “inflicted profound grief, suffering and loss” (Capriccioso,
2010).
Can an apology that was not verbalized or disseminated to tribes and not directed at the
American Indian victims of governmental research abuses suffice as a meaningful apology? For
American Indians, federally sponsored research is a double-edged sword, having both benefi-
cial and unfavorable outcomes. As indicated in this article, a great majority of the medical and
Downloaded by [University of California, Los Angeles (UCLA)] at 08:51 18 December 2012
UNETHICAL ABUSES IN AMERICAN INDIAN RESEARCH 441
research abuses perpetrated upon American Indians were conducted at the hands of the U.S. gov-
ernment or those charged with the health and welfare of American Indians. As wards of the federal
government, American Indians are under the stewardship of the government whose charge it is to
raise the health status of American Indians to the highest level possible. Still, American Indians
continue to report severe disparities in health status, education, and poverty rates. As many IHS
healthcare providers are commissioned officers, their appearance on reservations in military uni-
form can be a strong reminder of past federal scientific and medical abuses. Yet the relationship
between tribes and the federal government cannot be severed, as American Indian communities
continue to require healthcare services in rural and urban areas.
CONCLUSION
Following a long history of governmental unethical behaviors, tribes have become distrustful
of government-sponsored research and of researchers, fueling their reluctance to participate in
research studies (Burhansstipanov et al., 2005; Christopher, 2005, Trimble et al., 2010). The
Tuskegee Syphilis Study and the subsequent Belmont Report were the impetus for the develop-
ment of research protective measures, such as IRBs for the protection of human subjects. Tribal
and urban Indian groups have taken control of research by establishing IRBs under the supervi-
sion of tribes or tribal organizations. Further, American Indian cultures are now reflected in the
Tribal IRBs, as consideration of the individual human subject is expanded to include consider-
ation and protection of the collective tribal society. Tribes have undertaken publication review
and approval and have instituted a hybrid, community-based participatory research methodology
that takes tribal culture, in terms of group process and the cultural constructs of concepts and
perceptions, into consideration (Burhansstipanov et al., 2005; Christopher, 2005). In the face of
overwhelming health problems coupled with the fears and distrust of research and researchers,
American Indian tribes have taken these steps in an attempt to heal (Braveheart & DeBruyn,
1998) and to protect their communities from the abuses of research. Current Tribal IRBs have
been developed to respond to the collective structure of tribes and ensure the culturally appro-
priate interpretation of research data and security of research findings. Researchers should take
steps to collaborate with communities, share research findings, follow conditions imposed by
communities in order to enter, and gain access to respondents (Trimble et al., 2010).
President Obama’s Apology to acknowledge abuses suffered by American Indians is magni-
fied by the placement of the written apology within the Defense Appropriation Act. The wounds
of prior medical and research abuses will not heal without a meaningful apology that is delivered
in a respectful, direct manner. Multiple research insults on American Indians, especially those that
violated basic human rights and, in some cases, resulted in what many American Indians/Alaska
Natives consider as genocide (Grenke, 2005; Rubinstein; 2004; Stannard, 1992) cannot be easily
forgotten. A respectful apology would begin the path toward healing for American Indians and
tribal communities. Until then, tribes have secured tools and developed more effective ways
to protect their members and their communities. Implementing tribally controlled IRBs and
American Indian research committees are examples of resiliency, self-determination, and forward
thinking that can be viewed as positive steps by tribes to control of their future, by controlling
research.
Downloaded by [University of California, Los Angeles (UCLA)] at 08:51 18 December 2012
442 SCHANCHE HODGE
REFERENCES
Aberdeen Area Tribal Chairmen’s Health Board. (2005). Research ethics and Institutional Review Board (IRB) resources
for tribes and researchers. Retrieved from http://www.aatchb.org/epi/docs/ResearchEthics.htm
Aberdeen Area Tribal Chairmen’s Health Board. (2012). TCU/Tribal IRB checklist. Retrieved from http://www.aatchb.
org/epi/docs/ResearchEthics/T3-Checklist.doc
Advisory Committee on Human Radiation Experiments. (1995). Final report of the Advisory Committee on Human
Radiation Experiments. Washington, DC: Government Printing Office.
Allen, S. K. & Semba, R. D. (2002). The trachoma “menace” in the United States, 1897–1960. Survey of Ophthalmology,
47, 500–508.
Beauvais, F. (1989). Limited notions of culture ensure research failure. The Journal of the National Center,2, 25–28.
Berzok, L. M. (2005). American Indian food. Westport, CT: Greenwood.
Braveheart, M., & DeBruyn, L. (1998).The American Indian Holocaust: Healing historical unresolved grief. American
Indian Alaskan Native Mental Health Research,8, 56–78.
Brugge, D., & Missaghian, M. (2006). Protecting the Navajo people through tribal regulation of research. Science and
Engineering Ethics,12, 491–507.
Burhansstipanov, L., Christopher, S., & Schumacher, S. A. (2005). Lessons learned from community-based participatory
research in Indian country. Cancer Control,20(Suppl. 1), 70–76.
Caplan, A. L., & Moreno, J. D. (2010). The Havasu’BaajaTribe and informed consent. The Lancet,33, 621–622.
Capriccioso, R. (2010, January 20). A sorry saga: Obama signs Native American apology. Indian Country Today.
Retrieved from http://indiancountrytodaymedianetwork.com/2010/01/a-sorry-saga-obama-signs-native-american-
apology/
Carpio, M. V. (2004). The lost generation: American Indian women and sterilization abuse. Social Justice,31, 40–53.
Cherokee Nation v. Georgia, 30 U.S. 1 (1930). Chicago Committee to End Sterilization Abuse. (1977). Sterilization
abuse: A task for the women’s movement. Retrieved from http://www.cwluherstory.org/CWLUArchive/cesa.html
Christopher, S. (2005). Recommendations for conducting successful research with Native Americans. Journal of Cancer
Education,20(Suppl. 1), 47–51.
Christopher, S., Watts, V., McCormick, A. K., & Young, S. (2008). Building and maintaining trust in a community-based
participatory research partnership. American Journal of Public Health,98, 1398–1406.
Comptroller General of the United States. (1976, November 4). [Letter and report to Senator James Abourezk]
(B-164031).
Cornell, S. (1984). Crisis and response in Indian–White Relations: 1960–1984. Social Problems,32, 44–59.
Couzin-Frankel, J. (2010). DNA returned to tribe, raising questions about consent. Science,328, 558.
Crosby, A. W. (1976). Epidemics as a factor in the Aboriginal depopulation in America. William and Mary Quarterly,
33, 289–299.
Dalton, R. (2004). When two tribes go to war. Nature 500, 500–502.
Dean, S. B., & Webster, J. H. (2000). Contract support funding and the federal policy of Indian tribal self-determination.
Tulsa Law Journal,36, 349–379.
Defense Appropriations Act, Pub. L. 11–118, H.R. 3326, §8113, 2010.
Drabak-Syed, K. (2010). Lessons from the Havasupai Tribe v. Arizona State University Board of Regents: Recognizing
group, cultural, and dignitary harms as legitimate risks warranting integration into research practice. Journal of Health
& Biomedical Law,6, 175–225.
Duffy, J. (1951). Smallpox and the Indians in the American colonies. Bulletin of the History of Medicine,25, 324–341.
Edwards, D. D. (1998). White Feather medicine and the Blackfeet, 1855–1955: Native American health and the
Department of the Interior. In M. L. Hildreth & B. T. Moran (Eds.), Disease and medical care in the mountain
West: Essays on region, history, and practice (pp. 43–58). Reno: University of Nevada Press.
Fisher, P. A., & Ball, T. J. (2003). Tribal participatory research: Mechanisms of a collaborative model. American Journal
of Community Psychology,32(3/4), 207–216.
Fisher, P. A., & Ball, T. J. (2005). Balancing empiricism and local cultural knowledge in the design of prevention research.
Journal of Urban Health,82(2 Suppl. 3), iii44–iii55.
Foulks, E. F. (1989). Misalliances in the Barrow Alcohol Study. The Journal of the National Center,2(3), 7–17.
Glazer, E. M. (2004). Appropriating availability: Reconciling purpose and text under the Indian Self-Determination and
Education Assistance Act. University of Chicago Law Review,71, 1637–1660.
Downloaded by [University of California, Los Angeles (UCLA)] at 08:51 18 December 2012
UNETHICAL ABUSES IN AMERICAN INDIAN RESEARCH 443
Grenke, A. (2005). God, greed, and genocide: The Holocaust through the centuries (p. 161). Washington, D.C.: New
Academia.
Gulliford, A. (1996). The repatriation of Native American human remains. The Public Historian,18, 119–143.
Harmon, A. (2010, April 21). Indian tribe wins fight to limit research of its DNA. The New York Times,p.A1.
Harrison, A. O., Wilson, M. N., Pine, C. J., Chan, S. Q., & Buriel, R. (1990). Family ecologies of ethnic minority children.
Child Development, 61, 347–362.
Indian Self-Determination and Education Assistance Act, Pub. L. No. 93–638, 25 U.S.C. § 450 (1975).
Kinzie, J., & Manson, S. (1987). Self-rating scales in cross-cultural psychiatry. Hospital and Community Psychiatry,38,
190–196.
Lawrence, J. (2000). The Indian Health Service and the sterilization of Native American women. The American Indian
Quarterly,24, 400–419.
Maldonado, R. (n.d.) Navajo Nation IRB/Research protocols. Window Rock, AZ: The Native Peoples Technical
Assistance Office. Historic Preservation Department, Cultural Resource Compliance Section.
Manson, S. (1989). Editorial. The Journal of the National Center,2(3), 5.
Manson, S., Shore, J., & Bloom, J. (1985). The depressive experience in American Indian communities: A challenge for
psychiatric theory and diagnosis. In A. Kleinman & B. Good (Eds.), Culture and depression (pp. 331–368). Berkeley:
University of California Press.
McMullen, J. (1917). Trachoma and the army: The dangers incident to enlist recruits affected with the disease. Public
Health Reports,32, 1101–1104.
Mello, M. M., & Wolf, L. E. (2010). The Havasupai Indian tribe case – Lessons for research involving stored biological
samples. New England Journal of Medicine,263, 204–207.
Meriam, L. (1928). The problem of Indian Administration. Baltimore: Johns Hopkins.
Minkler, M. (2005). Community-based research partnerships: Challenges and opportunities. Journal of Urban Health,
82, 3–12.
Mohatt, G. V., & Thomas, L. R. (2005). I wonder, why would you do it that way? Ethical dilemmas in doing participatory
research with Alaska Native communities. In J. E. Trimble & C. B. Fisher (Eds.), The handbook of ethical research
with ethnocultural populations & communities (pp. 93–114). Thousand Oaks, CA: Sage.
National Research Council. (1996). The Arctic Aeromedical Laboratory’s Thyroid Function Study: A radiological and
ethical analysis. Washington, DC: National Academy Press.
Navajo Human Research Review Board. (2007). IRB research protocol application guidelines. Window Rock, AZ: Navajo
Division of Health.
Noe, T. D., Manson, S. M., Croy, C. D., McGough, H., Henderson, J. A., & Buchwald, D. S. (2006). In their own voices:
American Indian decisions to participate in health research. In J. E. Trimble & C. B. Fisher (Eds.). The handbook of
ethical research with ethnoculturalpopulations &communities (pp. 77–92). Thousand Oaks, CA: Sage.
O’Nell, T. O. (1994). Telling about Whites, talking about Indians: Oppression, resistance, and contemporary American
Indian identity. Cultural Anthropology,9, 94–126.
Parkman, F. (1994). The conspiracy of Pontiac and the Indian War after the conquest of Canada: From the spring of
1763 to the death of Pontiac (Vol. 2). Lincoln: University of Nebraska Press.
Patterson, K. B., & Runge, T. (2002). Smallpox and the Native American. American Journal of Medical Science,323,
216–222.
Potkonjak, M. (2004, March 17). Havasupai tribe files $50M lawsuit against Arizona State University. East Valley Tribune.
Reid, P. T. (2002). Multicultural psychology: Bringing together gender and ethnicity. Cultural Diversity and Ethnic
Minority Psychology,8, 103–114.
Riding In, J. (1996). Repatriation: A Pawnee’s perspective. American Indian Quarterly,20, 238–250.
Rimmer, M. (2007). The genographicproject: Traditional knowledge and population genetics. Australian Indigenous Law
Review,11, 33–54.
Rosenfeld, B., Wolfe, S. M., & McGarrah, R. E. (1973). A health research group study on surgical sterilization: Present
abuses and proposed regulations (pp. 2–7). Washington DC: Health Research Group
Rubinstein, W. D. (2004). Genocide: A history. Upper Saddle River, NJ: Pearson Education. Retrieved from http://books.
google.com/
Rutecki, G. W. (2011). Forced sterilization of Native Americans. Later twentieth century physician cooperation with
national eugenic policies? Ethics & Medicine,27, 33–43.
Santos, L. (2008). Genetic research in Native communities. Progress in Community Health Partnerships: Research,
Education and Action,2, 321–327.
Downloaded by [University of California, Los Angeles (UCLA)] at 08:51 18 December 2012
444 SCHANCHE HODGE
Shore, J. H. (1989). Transcultural research run amok or arctic hysteria? The Journal of the National Center,2, 46–50.
Stannard, D. (1992). American holocaust: The conquest of the new world. New York, NY: Oxford University Press
Stearn, W., & Stearn, A. E. (1945). The effect of smallpox on the destiny of the Amerindian(Boston), (pp. 74–76).
Sterling, R. L. (2011). Genetic research among the Havasupai—A cautionary tale. Virtual Mentor,13, 113–117.
Stiffarm, L. A., & Lane, P. (1992). The demography of Native North America: A question of American Indian survival.
In M. A. Jaimes (Ed.), The state of Native America: genocide, colonization and resistance (pp. 23–53). Boston, MA:
South End Press.
Thomas, D. H. (2000). Skull wars: Kennewick man, archeology, and the battle for Native American identity.NewYork,
NY: Basic Books.
Thornton, R. (1987). American Indian Holocaust and survival: A population history since 1492. Norman: University of
Oklahoma Press.
Thornton, R. (2000). Population history of Native North Americans. In M. R. Haines & R. H. Steckel (Eds.), A population
history of North America (pp. 9–50). Cambridge, UK: Cambridge University Press.
Thygeson, R. (1938). The treatment of trachoma with sulfanilamide: A report of 28 cases. Transactions of the American
Ophthalmological Society,111, 1371–1372.
Torpy, S. J. (2000). Native American women and coerced sterilization: On the Trail of Tears in the 1970s. American
Indian Culture and Research Journal,24, 1–22.
Trimble, J. E., Scharron-del Rio, M. R., & Bernal G. (2010). The itinerant researcher: Ethical and methodological issues
in conducting cross-cultural mental health research (pp. 73–95). In D. Crowley Jack & A. Ali (Eds.), Silencing the
self across cultures. Depression and gender in the social world. New York, NY: Oxford University Press.
US apologizes for infecting Guatemalans with STDs in the 1940s. (2010). CNN. Retrieved from http://articles.cnn.com/
2010-10-01/world/us.guatemala.apology_1_apologies-research-study-guatemala-city?_s=PM:WORLD
U.S. Department of Health, Education and Welfare. (1978). Family planning, contraception, voluntary sterilization and
abortion: An analysis of laws and policies in the United States, each state and jurisdiction (as of September 1971)
(Pub. No. 74–16001) (p. 89). Washington, DC: Government Printing Office.
Wallerstein, N., & Duran, B. (2010). Community-based participatory research contributions to intervention research: The
intersection of science and practice to improve health equity. American Journal of Public Health,100, S40–S46.
Westermeyer, J. (1989). Research of stigmatized conditions: Dilemma for the sociocultural psychiatrist. The Journal of
the National Center,2, 41–45.
Wolf, A. S. (1989). The Barrow study: An Alaskan’s perspective. The Journal of the National Center,2, 35–40.
Downloaded by [University of California, Los Angeles (UCLA)] at 08:51 18 December 2012
... El presente estudio hace hincapié en que el comportamiento poco ético ha conducido a la opresión y la falta de respeto de la dignidad humana de los pueblos indígenas. Los abusos en la El Triángulo de la Decadencia en el dumping ético y la investigación poco ética... investigación con comunidades indígenas han sido ampliamente documentados (10,(13)(14)(15)(16)(17). ...
Article
Full-text available
Este estudio documenta algunos elementos de la investigación poco ética en la que participan poblaciones indígenas, como la falta de con-sentimiento informado de los participantes, la falta de implicación de la comunidad para la consulta o el permiso de uso de los datos o mues-tras biológicas recogidos, y la preocupación por la sensibilidad cultural. El Triángulo de la Decadencia se ha propuesto como una posible for-ma de promover un cambio de mentalidad entre los investigadores que ayude a identificar los problemas centrales de la investigación poco ética. Ofrece una posible explicación de lo que desencadena el dumping ético, describiendo los tres puntos como 1) abuso de poder, 2) desconocimiento de las normas éticas de investigación y 3) intereses económicos, y en el centro del triángulo se encuentra 4) el silencio y la la complicidad de terceros que agravan la situación. Se presentan posi-bles soluciones a estos problemas. Por último, explicamos que tam-bién existe un riesgo de representación selectiva y de tokenización de las comunidades indígenas.
... The present study emphasizes that unethical behavior has led to the oppression and disrespect of the human dignity of Indigenous peoples. Abuses in research with Indigenous communities have been widely documented (10,(13)(14)(15)(16)(17). ...
Article
Full-text available
This study documents some elements of unethical research involving Indigenous populations, including lack of informed consent of participants , lack of community involvement for consultation or permission for use of data or biological samples collected, and concerns about cultural sensitivity. The Triangle of Decadence has been proposed as a possible way to promote a change of mentality among researchers that helps to identify the core problems of unethical research. It gives a possible explanation of what triggers ethical dumping, describing the three points as 1) abuse of power, 2) ignorance of ethical research regulations, and 3) economic interests, and in the middle of the triangle is 4) the silence and complicity of third parties that aggravate the situation. Possible solutions to these problems are presented. Finally, we explain that there is also a risk of selective representation and tokeni-zation of Indigenous communities.
... Alaska Native and American Indian (ANAI) peoples have experiences with research that has caused individual and community harms, while not providing direct ANAI community benefit (Hodge 2012;NRC Committee 1996;Pacheco et al. 2013;Skewes et al. 2020;Tuck 2009). Moreover, many ANAI peoples have expressed concerns and the need for necessary governance related to secondary use of data and biospecimens for research (Hudson et al. 2020;James et al. 2014). ...
Article
Full-text available
Precision medicine holds promise for improving health care by tailoring disease treatment and prevention efforts to the needs of individual patients. It also raises ethical questions related to equitable distribution of the benefits of precision medicine; data management, including the terms of data ownership, sharing, and security; and, the nature and extent of community engagement in and oversight of research. These questions are particularly salient for minoritized communities that have been harmed by unethical research practices and often deprived the full benefit of advances in medical science. Understanding the perspectives of these communities is essential to the design and conduct of ethical and effective precision medicine research. This study explored perspectives on the acceptability, feasibility, value, and benefits and harms of precision medicine research among Alaska Native and American Indian (ANAI) peoples. We conducted four focus groups with ANAI individuals who receive primary care from a Tribal health organization in Anchorage, Alaska. Participants were willing to engage in precision medicine research provided specific requirements were met. Research must be conducted by the Tribal health organization or another trusted partner, community health priorities must drive the research agenda, and researchers must employ robust data protections to guard against loss of data security and maintain control over data use and access. These requirements work collectively to ensure research benefits and respects Tribal sovereignty. These findings could help inform efforts to design and implement precision medicine research programs tailored to concerns of ANAI peoples.
... Irresponsible data collection and storage have plagued the AI/AN health and mental health literature (Drabiak-Syed, 2010). In the name of "scientific advancement," AI/AN individuals have suffered medical abuses, unsubstantiated claims of biological inferiority, and subsequent ineffective care and discrimination (Hodge, 2012). Some of these missteps may be due to a breakdown in communication between Western researchers and Indigenous communities. ...
... However, the researchers failed to consult Native peoples and communities that had significant ethical concerns related to survey design and purpose. Similarly, national newspapers have used surveys to justify the use of racist Native American mascots (Hamilton et al. 2019;Hodge 2012). These studies have weaponized data against Native peoples and know nothing about them and their unique histories (Fryberg et al. 2021). ...
... This randomized controlled trial (RCT), entitled Native WYSE (Women, Young, Strong, and Empowered making) CHOICES, was designed to be administered fully virtually; that is, all recruitment, informed consent, data collection, retention activities, and intervention engagement occurred by mobile and online technology (for details on study design and methodology, see Kaufman et al., 2023). While such a design provides many benefits, including national reach and increased tribal and cultural diversity, the absence of in-person connection can be a detriment, especially in research with underserved populations who often mistrust research efforts (Hodge, 2012). To increase relevance and trust, the study integrated multiple components of Indigenist community-based participatory research into the virtual design, including Native oversight and review, inclusion of Native voices in research, and building community and partnerships (Kaufman et al., 2023;Tuitt et al., 2022). ...
Article
Full-text available
Background The majority of alcohol‐exposed pregnancy (AEP) prevention programs for Native women have focused on at‐risk adult women residing in rural tribal communities; however, over 70% of the Native population resides in urban areas. Moreover, Native young women universally—regardless of risk status—may benefit from culturally tailored resources. We hypothesized that urban Native young women who engaged with Native WYSE CHOICES (NWC), a culturally tailored AEP prevention intervention delivered by mobile phone app, would report reduced risk of AEP at the 1‐month follow‐up compared to those who engaged with a comparison condition. Methods From August 2021 to January 2023, we recruited 439 urban Native young women (ages 16–20) nationally to a randomized controlled trial administered fully virtually including most recruitment, data collection and intervention engagement. Participants were randomly assigned to the NWC app or an alternative app. We used linear and logistic regression analyses to predict scores on 1‐month outcome variables by study arm assignment. Results Results of regression analyses predicting scores on 1‐month outcomes by study arm showed trending intervention effects on measures of AEP knowledge (p = 0.06), alcohol use with sexual activity (p = 0.10), and an AEP risk index (p = 0.12). At 1‐month follow‐up, intervention group participants reported greater AEP knowledge, lower likelihood of alcohol‐involved sexual activity in the past month, and lower scores on an AEP risk index compared to the comparison group. Conclusions The NWC app produced trending changes in key areas of knowledge and behavior that may result in reduced AEP risk among urban Native young women. These findings suggest that the NWC app holds promise for addressing AEP in Native populations. Small changes in these areas may result in lifelong changes in the current generation that impact the health and wellbeing of generations to come.
... Graham, and their host communities have arisen surrounding issues of land acquisition, stewardship, and management. These contentious relationships have resulted in negative associations with academic, scientific, and technical projects within those host communities, [24][25][26] have led to significant risk for the facility's success, and underscore the need for a revised approach (see the recommendation from Ref. 27 and references therein). Thus, Cosmic Explorer's approach to location identification and evaluation necessarily includes a thorough study of the historical and social landscape as well as early and consistent relationship building with local and Indigenous communities. ...
Article
Full-text available
Cosmic Explorer is a next-generation ground-based gravitational-wave observatory that is being designed in the 2020s and is envisioned to begin operations in the 2030s together with the Einstein Telescope in Europe. The Cosmic Explorer concept currently consists of two widely separated L-shaped observatories in the United States, one with 40 km-long arms and the other with 20 km-long arms. This order of magnitude increase in scale with respect to the LIGO-Virgo-KAGRA observatories will, together with technological improvements, deliver an order of magnitude greater astronomical reach, allowing access to gravitational waves from remnants of the first stars and opening a wide discovery aperture to the novel and unknown. In addition to pushing the reach of gravitational-wave astronomy, Cosmic Explorer endeavors to approach the lifecycle of large scientific facilities in a way that prioritizes mutually beneficial relationships with local and Indigenous communities. This article describes the (scientific, cost and access, and social) criteria that will be used to identify and evaluate locations that could potentially host the Cosmic Explorer observatories.
... Yet, in the Indigenous context, history suggests that data sharing may result in unethical research practices or harm to communities. An example of such harm from data misuse was the lack of informed consent to blood samples from the Havasupai for research that arguably could contribute to damaging narratives about the community (Hodge 2012). Unfortunately, another example of such harm emerged in the United States during the COVID-19 pandemic. ...
Article
Full-text available
The Indigenous data sovereignty movement has arisen out of the ambition of Indigenous peoples to benefit from data-informed policy while preventing extractive and harmful research practices by external governments or researchers. Tribes exercise the sovereign authority to choose whether and when to share data with researchers and institutions outside their communities. To provide insight into how Indigenous peoples feel about data sharing, we document meaningful variation in a unique, nationwide survey of Native Americans. We find that respondents support their tribes in sharing data for economic benefit and that those who vote in tribal elections are particularly supportive. As tribal leaders, Native communities, and external research partners address potentially harmful data gaps and build Indigenous data resources, our findings suggest the importance of carefully considering and communicating the purpose of data collection and sharing. Broad benefit to Indigenous peoples’ economic well-being is one factor that likely increases support for data sharing.
Article
Full-text available
Aims To present a model of the determinants of maternal mortality for Indigenous women—social, structural, political and biological. Design Non‐Indigenous academicians and an Indigenous tribal citizen and scholar partnered to amplify Indigenous women's voices. Method With epistemic decolonisation and Indigenist feminism as our theoretical basis, we used theory derivation to create a model of the determinants of Indigenous maternal mortality. Results Risk factors include biological warfare and ongoing cultural genocide. We also identified protective factors like resilience and cultural connectedness. Finally, we illustrate complex and multifaceted relationships among and between these concepts in a model of the determinants of Indigenous maternal mortality. Conclusion Solutions that address determinants of Indigenous maternal mortality are critical for Indigenous families to flourish. Academic researchers and tribal communities must continue to partner to support the safety and vitality of Indigenous women. Implications for the Profession Our model can inform nursing and other research, including interdisciplinary research, policy development and trauma‐informed, culturally relevant clinical practice to address disparities in maternal mortality that Indigenous women experience. Impact Despite increasing attention to the United States' maternal health crisis, stark disparities persist between groups of women. At its peak in December 2021, Indigenous maternal mortality was 118.7 deaths per 100,000 live births—the highest of all groups, and almost 5 times higher than that of their White counterparts (26.6). Reporting Method Not applicable. Patient or Public Contribution Three members of the public who identify as Indigenous agreed to review and comment on the model specifically from their Indigenous lens.
Article
Full-text available
In March 2010, members of the Havasupai tribe and Arizona State University Board of Regents entered into a settlement agreement, signaling the end of a lengthy legal battle over the research use of blood samples. Approximately twenty years ago, researchers at ASU began collecting blood from members of the tribe to conduct what the tribe thought would be diabetes research projects. Years later, however, the tribe discovered that a researcher at ASU shared their blood with other researchers and conducted research on schizophrenia, inbreeding, and human population migration theories. Upon discovering how researchers at ASU had been using their blood, tribe members asserted that consent to such research would not have been acquired had they been adequately informed, and they demanded that ASU withdraw them from the study and return their blood samples. When ASU refused, members of the tribe filed two separate lawsuits against the University, alleging that ASU's actions resulted in cultural, dignitary, and group harm to the participants. The progression of events during the course of research and subsequent litigation demonstrates how the current legal and ethical framework governing the collection of biological materials for research fails to account for assessments of risk and harm that are specific and unique to identifiable population groups and Native American tribes.
Book
This, the first, in-depth survey of Native American Indian foodways is an amazing chronicle of both human development over thousands of years and American history after the European invasion. It sheds light not only on this group and their history but on American food culture and history as well. For thousands of years an intimate relationship existed between Native Americans and their food sources. Dependence on nature for subsistence gave rise to a rich spiritual tradition with rituals and feasts marking planting and harvesting seasons. The European invasion forced a radical transformation of the indigenous food habits. Foodways were one of the first layers of culture attacked. Indians were removed from their homelands, forced to cultivate European crops such as wheat and grapes, new animals were introduced, and the bison, a major staple in the Great Plains and West, was wiped out. Today, American Indians are trying to reclaim many of their food traditions. A number of their foodways have become part of the broader American cookbook, as many dishes eaten today were derived from Native American cooking, including cornbread, clam chowder, succotash, grits, and western barbeque. The story of Native American foodways presented here is an amazing chronicle of both human development over thousands of years and American history after the European invasion. Through cultural evolution, the First Peoples worked out what was edible or could be made edible and what foods could be combined with others, developed unique processing and preparation methods, and learned how to preserve and store foods. An intimate relationship existed between them and their food sources. Dependence on nature for subsistence gave rise to a rich spiritual tradition with rituals and feasts marking planting and harvesting seasons. The foodways were characterized by abundance and variety. Wild plants, fish, meat, and cultivated crops were simply prepared and eaten fresh or smoked, dried, or preserved for lean winters. The European invasion forced a radical transformation of the indigenous food habits. Foodways were one of the first layers of culture attacked. Indians were removed from their homelands, forced to cultivate European crops, such as wheat and grapes, new animals were introduced, and the bison, a major staple in the Great Plains and West, was wiped out. Today, American Indians are trying to reclaim many of their food traditions. Other traditions have become part of the broader American cookbook, as many dishes eaten today were derived from Native American cooking, including cornbread, clam chowder, succotash, grits, and western barbeque. The scope is comprehensive, covering the six major regions, from prehistory until today. Chapters on the foodways history, foodstuffs, food preparation, preservation, and storage, food customs, food and religion, and diet and nutrition reveal the American Indians’ heritage as no history can do alone. Examples from many individual tribes are used, and quotations from American Indians and white observers provide perspective. Recipes are provided as well, making this a truly indispensable source for student research and general readers.
Article
For four hundred years-from the first Spanish assaults against the Arawak people of Hispaniola in the 1490s to the US Army's massacre of Sioux Indians at Wounded Knee in the 1890s-the indigenous inhabitants of North and South America endured an unending firestorm of violence. During that time the native population of the Western Hemisphere declined by as many as 100 million people. Indeed, as historian David E. Stannard argues in this stunning new book, the European and white American destruction of the native peoples of the Americas was the most massive act of genocide in the history of the world. Stannard begins with a portrait of the enormous richness and diversity of life in the Americas prior to Columbus's fateful voyage in 1492. He then follows the path of genocide from the Indies to Mexico and Central and South America, then north to Florida, Virginia, and New England, and finally out across the Great Plains and Southwest to California and the North Pacific Coast. Stannard reveals that wherever Europeans or white Americans went, the native people were caught between imported plagues and barbarous atrocities, typically resulting in the annihilation of 95 percent of their populations. What kind of people, he asks, do such horrendous things to others? His highly provocative answer: Christians. Digging deeply into ancient European and Christian attitudes toward sex, race, and war, he finds the cultural ground well prepared by the end of the Middle Ages for the centuries-long genocide campaign that Europeans and their descendants launched-and in places continue to wage-against the New World's original inhabitants. Advancing a thesis that is sure to create much controversy, Stannard contends that the perpetrators of the American Holocaust drew on the same ideological wellspring as did the later architects of the Nazi Holocaust. It is an ideology that remains dangerously alive today, he adds, and one that in recent years has surfaced in American justifications for large-scale military intervention in Southeast Asia and the Middle East. At once sweeping in scope and meticulously detailed, American Holocaust is a work of impassioned scholarship that is certain to ignite intense historical and moral debate.
Article
The abstract for this document is available on CSA Illumina.To view the Abstract, click the Abstract button above the document title.
Article
L'A. examine l'une des composantes, souvent negligee, du mouvement des droits civiques aux Etats-Unis dans les annees 1970. Il montre comment, face au silence sur la sterilisation forcee des femmes amerindiennes, les revendications identitaires et culturelles des Amerindiens se sont exprimees egalement par la defense des droits autochtones a la reproduction biologique et a la perennite demographique des nations indiennes. A partir d'exemples concrets de femmes soumises a la sterilisation forcee, il decrit notamment le role des services sociaux et de sante dans ces operations, ainsi que les differentes actions legales, et les interventions des organisations autochtones, pour garantir le respect des droits de la femme a la libre procreation.