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No Meaningful Apology for American Indian Unethical Research Abuses



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.
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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
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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
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:
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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.
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
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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,
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,
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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.
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).
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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
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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).
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
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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
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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.
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,
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
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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
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:
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H.R. 3326, PUBLIC LAW 111–118—DEC. 19, 2009 123 STAT. 3409 123 STAT. 3454 – Section 8113
—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,
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
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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.
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
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... Health and mental health research conducted among American Indian and Alaska Native (AIAN) 1 populations has a history of exploitation and abuse [1][2][3][4][5][6]. Specifically, AIAN communities have suffered medical abuses, including deliberate spread of smallpox through infected blankets, removal of eyelids (i.e., tarsectomy) to treat trachoma, and illegal sterilization of women and girls without knowledge or consent [5]. ...
... Health and mental health research conducted among American Indian and Alaska Native (AIAN) 1 populations has a history of exploitation and abuse [1][2][3][4][5][6]. Specifically, AIAN communities have suffered medical abuses, including deliberate spread of smallpox through infected blankets, removal of eyelids (i.e., tarsectomy) to treat trachoma, and illegal sterilization of women and girls without knowledge or consent [5]. AIAN communities have also suffered numerous research abuses including administration of dangerous doses of radioactive iodine without consent, conduct of alcohol use research without consent or appropriate consideration of context, genetic research without informed consent, and unethical handling of blood samples [5]. ...
... Specifically, AIAN communities have suffered medical abuses, including deliberate spread of smallpox through infected blankets, removal of eyelids (i.e., tarsectomy) to treat trachoma, and illegal sterilization of women and girls without knowledge or consent [5]. AIAN communities have also suffered numerous research abuses including administration of dangerous doses of radioactive iodine without consent, conduct of alcohol use research without consent or appropriate consideration of context, genetic research without informed consent, and unethical handling of blood samples [5]. These grave violations have led to a mistrust of healthcare and research systems by AIAN people. ...
Full-text available
American Indian and Alaska Native (AIAN) populations have suffered a history of exploitation and abuse within the context of mental health research and related fields. This history is rooted in assimilation policies, historical trauma, and cultural loss, and is promulgated through discrimination and disregard for traditional culture and community knowledge. In recognition of this history, it is imperative for researchers to utilize culturally sensitive approaches that consider the context of tribal communities to better address mental health issues for AIAN individuals. The public availability of data from large-scale studies creates both opportunities and challenges when studying mental health within AIAN populations. This manuscript has two goals; first, showcase an example of problematic use of Adolescent Brain Cognitive Development (ABCD) StudySM data to promulgate stereotypes about AIAN individuals and, second, in partnership with collaborators from Cherokee Nation, we provide five recommendations for utilizing data from publicly available datasets to advance health research in AIAN populations. Specifically, we argue for the consideration of (1) the heterogeneity of the communities represented, (2) the importance of focusing on AIAN health and well-being, (3) engagement of relevant communities and AIAN community leaders, (4) consideration of historical and ongoing injustices, and (5) engagement with AIAN regulatory agencies or review boards. These recommendations are founded on principles from broader indigenous research efforts emphasizing community-engaged research and principles of Indigenous Data Sovereignty and Governance.
... (1) Risks of perpetuating legacies of colonialism and structural racism: The workshop and narrative review highlighted the influence of historical trajectories of structural racism, legacies of colonialism and unethical conduct, on current experiences of participating in biomedical studies (Bowekaty & Davis, 2003;Christopher et al, 2011;Harding et al, 2012;Harry & Dukepoo, 1998;Hodge, 2012;Kelley et al, 2013;Morton et al., 2013;Strickland, 2006;Washington 2006). 7 The study of genetics has itself played a part in perpetuating racism (Roberts, 2011) and has been used to support racist ideologies (ASHG perspective, 2018). ...
... Colonization practices by the Russians and Europeans, and later by the U.S., included taking Indigenous Land through warfare, disease, slavery, deceitful treaties, and forced relocation (Fisher, 2017;Hodge, 2012;Jones, 1982;Wolfe, 1982). Land taking was justified first by the 1493 Doctrine of Discovery which claimed that land was "empty" and open to being "discovered" if the current inhabitants were not Christian (Miller, 2019). ...
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Indigenous communities have painful histories of colonization, resulting in historical trauma and adverse current community conditions (CCCs). This is a mixed method study of Administration for Native Americans grants that includes analysis of project summaries and CCCs as well as a analysis of impact and effectiveness scores finished projects are given by ANA evaluators. The results show that all grants included in the analysis are addressing colonization and almost half of the grants are utilizing culture as a protective factor. The projects using culture as a protective factor have significantly higher effectiveness ratings, which means they are achieving their objectives more than those not using culture. Grantee project examples are in the discussion. The paper concludes with policy implications for funders.
... Because of the noted difficulties of conducting research on Indian lands (Allen and Semba 2002;Hodge 2012;Rosenthal 2014;Stern 2005) and the similarity of interviews to traditional ways of sharing information, I used interviews to explain the purpose of the research. In order to overcome a major discrepancy between Apache ways of knowing and university ways of gathering data (Deloria 1969), I utilized interview time to adjust questions and my approach to help facilitate information sharing in a culturally appropriate manner. ...
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Stevens, Philip J. and Vanessa E. Anthony-Stevens. 2023. “Research and Practice as Tribal Nation Building in Action.” Anthropology News website, March 23, 2023.
... Perhaps even more concerning, if we make a concerted effort to increase recruitment of participants from marginalized communities, there may still be a reluctance for Black, Indigenous and minoritized populations to participate in research. Broadly, this reluctance follows generations of unethical and at times gruesome treatment [22][23][24][25] . While some of the sources of medical and scientific mistrust in minoritized communities are common knowledge in academic circles, such as the Tuskegee experiment in which syphilis was left untreated in African American men, leading to nearly 100 deaths 26,27 , other historical events are less well known. ...
Across the brain sciences, institutions and individuals have begun to actively acknowledge and address the presence of racism, bias, and associated barriers to inclusivity within our community. However, even with these recent calls to action, limited attention has been directed to inequities in the research methods and analytic approaches we use. The very process of science, including how we recruit, the methodologies we utilize and the analyses we conduct, can have marked downstream effects on the equity and generalizability of scientific discoveries across the global population. Despite our best intentions, the use of field-standard approaches can inadvertently exclude participants from engaging in research and yield biased brain–behavior relationships. To address these pressing issues, we discuss actionable ways and important questions to move the fields of neuroscience and psychology forward in designing better studies to address the history of exclusionary practices in human brain mapping. The use of field-standard approaches in neuroscience and psychology can exclude participants from research, biasing our understanding of brain–behavior relations. Here the authors discuss how we might address inequity in our scientific methodology.
... Respondents also stated concerns about the long-term effects of PrEP on their sexual and reproductive health. The US has a legacy of medical mistrust related to reproductive abuse resulting in the forced sterilization and administration of contraceptives without the consent of Black, Latinx, and Indigenous women of color (Hodge, 2012). It has been noted that health care providers have limited knowledge related to PrEP Petroll et al., 2017) which may lead to misinformation, lack of trust and may perpetuate negative attitudes about PrEP use among AEA. ...
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HIV/AIDS disproportionately impacts Black cisgender female adolescents and emerging adults. Pre-Exposure Prophylaxis (PrEP) reduces the risk of HIV infection; however, structural barriers may exacerbate resistance to PrEP in this population. The purpose of this paper is to understand the characteristics of age, race, gender, history, and medical mistrust as barriers to PrEP uptake among Black female adolescents and emerging adults (N=100 respondents) between the ages of 13-24 years in Chicago. Between January and June of 2019, participants completed the survey. We used directed content analysis to examine reported barriers to PrEP uptake. The most commonly identified barriers to PrEP uptake were side effects (N=39), financial concerns (N=15), and medical mistrust (N=12). Less frequently reported barriers included lack of PrEP knowledge and misconceptions (N=9), stigma (N=2), privacy concerns (N=4). We describe innovative multi-level strategies to provide culturally safe care to improve PrEP acceptability among Black female adolescents and emerging adults in Chicago. These recommendations may help mitigate the effect of medical mistrust, stigma, and misconceptions of PrEP within Black communities.
... There is a critical need to increase the representation of AI/AN students pursuing health research professions (AAMC and Association of American Indian Physicians, 2018; National Science Foundation, 2019; WGDBRW and ACD, 2012). Any efforts to do so must address the history of abuse in research and a lack of cultural awareness in academic health institutions (Hodge, 2012;Stiffarm and Lane, 1992;Thornton, 1987). Scholars in this field note that this work requires collaborative efforts between AI/ANs and non-AI/ANs to embrace Indigenous worldviews and support culturally responsive research methods (Burgess et al., 2020;Walters and Simoni, 2009;Walters et al., 2019). ...
... The knowledge system oppresses and discredits Indigenous Peoples through colonization and, eventually, unethical research activities [35], [38]. Traditional societies are frequently denied access to information and harassed by researchers [39]. When Indigenous Peoples agree to participate in research, they are subjected to 'helicopter research,' in which researchers arrive, collect data, and then leave the Indigenous Peoples with the data, leaving the community with nothing [26], [40], [41]. ...
This study explored possible scenarios for the future of the Indigenous Peoples' sustainability linked to the SDGs goal elements by applying the Ethnography Future Research (EFR) synergized with Indigenous methodologies. The study applied interview techniques, storytelling, and sharing-talking circles to collect data, and involved 31 selected informants representing social segments of the Serawai, an Indigenous People in Bengkulu Province, Indonesia. The study employed domain, taxonomy, componential, and cultural themes analysis. The research findings showed that the EFR combined with the indigenous research approach can identify and comprehend the sustainability indicators of Indigenous People. The indicators were obtained through scenarios formulated by research participants including optimistic, pessimistic, and most likely scenarios. The ERF synergized with indigenous research methods facilitated Indigenous Peoples to determine their future based on Indigenous perspectives and allowed researchers to involve Indigenous Peoples in the entire research process. The research findings had been a significant source of data and information in the process of drafting the Regional Regulation on Indigenous Peoples in Bengkulu province.
While research has been conducted with and in marginalized or vulnerable groups, explicit guidelines and best practices centering on specific communities are nascent. An excellent case study to engage within this aspect of research is Black Twitter. This research project considers the history of research with Black communities, combined with empirical work that explores how people who engage with Black Twitter think about research and researchers in order to suggest potential good practices and what researchers should know when studying Black Twitter or other digital traces from marginalized or vulnerable online communities. From our interviews, we gleaned that Black Twitter users feel differently about their content contributing to a research study depending on, for example, the type of content and the positionality of the researcher. Much of the advice participants shared for researchers involved an encouragement to cultivate cultural competency, get to know the community before researching it, and conduct research transparently. Aiming to improve the experience of research for both Black Twitter and researchers, this project is a stepping stone toward future work that further establishes and expands user perceptions of research ethics for online communities composed of vulnerable populations.
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In this article, the authors use an environmental justice lens to review the history of land management practices: first practiced through stewardship by Indigenous Peoples and then taken over by Western science-based land management. There is a long history of environmental injustice in this Great Turtle Island (North America), and we specifically focus on what is happening in the land currently called the United States. The objective of this article is to explain how to integrate Indigenous Traditional Ecological Knowledge (Indigenous TEK) into Western land management practices through Indigenous-academic partnerships. We address this objective through: 1) a review of the literature on environmental injustice in Indigenous communities, the role Indigenous TEK has in providing sound ecological principles for land management, and examples of Indigenous co-management; 2) explaining how to engage in an Indigenous-academic partnerships; 3) through a quasi-case study we utilize qualitative narrative storytelling to tell the story and process through which some of our authors engaged in an Indigenous-academic partnership, the Earth Partnership-Indigenous Arts and Sciences (EP-IAS), with local Indigenous Tribal Nations through relationship building and dialogue to develop Indigenous-driven restoration and land management in the region; and 4) concluding with a discussion on how Indigenous-academic land management partnerships address environmental justice issues and create meaningful opportunities to address historical inequities. The quasi-case study we provide demonstrates the EP-IAS community engagement model, which exemplifies a mutually beneficial and respectful Indigenous-academic partnership through integrating Indigenous TEK and Western science in land management.
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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.
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.
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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.