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Guinea Pig Kids: Myth or Modern Tuskegees?

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The Tuskegee syphilis study represents a nadir in health research in the U.S., when individuals’ bodies were used to satisfy researchers’ curiosity with no anticipated clinical benefit. The study is often used as a teaching case, in research methods and biomedical ethics training, symbolizing the past, before the federal government intervened and created human protections regulations to protect participants. The Tuskegee study continues to have other ripple effects, contributing to African Americans’ distrust of health research. This paper analyzes three medical studies from the 1990s that involved African American children. We examine the institutional actors that implemented these studies, and the community members of color who protested against them, and compare the tone of media accounts in African American and mainstream publications. We find that powerful governmental and medical institutions collaborated to implement these problematic studies, and that both mainstream and African American news outlets conveyed protestors’ concerns about the ethics of the studies, resulting in federal investigations. Our hypothesis that African American outlets provided more negative coverage was not supported, suggesting distrust of biomedicine regarding race is more widespread. The unethical practices reported here raise key questions about the inclusion of both minority populations and children in medical research.
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Guinea Pig Kids: Myths or Modern
Tuskegees?
Valerie Leitera & Sarah Hermana
a Department of Sociology, Simmons College, Boston, Massachusetts,
USA
Published online: 31 Dec 2014.
To cite this article: Valerie Leiter & Sarah Herman (2015) Guinea Pig Kids: Myths or Modern
Tuskegees?, Sociological Spectrum: Mid-South Sociological Association, 35:1, 26-45, DOI:
10.1080/02732173.2014.978429
To link to this article: http://dx.doi.org/10.1080/02732173.2014.978429
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Guinea Pig Kids: Myths or Modern Tuskegees?
Valerie Leiter and Sarah Herman
Department of Sociology, Simmons College, Boston, Massachusetts, USA
The Tuskegee syphilis study represents a nadir in health research in the U.S., when individuals’ bodies
were used to satisfy researchers’ curiosity with no anticipated clinical benefit. The study is often used
as a teaching case, in research methods and biomedical ethics training, symbolizing the past, before the
federal government intervened and created human protections regulations to protect participants. The
Tuskegee study continues to have other ripple effects, contributing to African Americans’ distrust of
health research. This paper analyzes three medical studies from the 1990s that involved African
American children. We examine the institutional actors that implemented these studies, and the
community members of color who protested against them, and compare the tone of media accounts
in African American and mainstream publications. We find that powerful governmental and medical
institutions collaborated to implement these problematic studies, and that both mainstream and African
American news outlets conveyed protestors’ concerns about the ethics of the studies, resulting in
federal investigations. Our hypothesis that African American outlets provided more negative coverage
was not supported, suggesting distrust of biomedicine regarding race is more widespread. The
unethical practices reported here raise key questions about the inclusion of both minority populations
and children in medical research.
There is a long history of medical experimentation on people of color in the United States,
particularly African Americans. The Tuskegee syphilis experiment is often invoked in discus-
sions of race and medical research in the United States. Yet medical experimentation on African
Americans began during slavery, long before the Tuskegee study (Rosenberg 1987). Recently,
analysts have asserted that human rights violations have continued in medical experiments, both
in the U.S. and abroad (Cook and Jackson 2012). The 2010 disclosure that the United States
infected individuals in Guatemala with syphilis and other sexually transmitted diseases during
the 1940s has brought the issue of medical experimentation back into the limelight, as the public
learned of the deliberate exposure of soldiers, prisoners, and mental patients (Weiss 2010).
‘‘Vulnerable populations’’ such as soldiers, prisoners, mental patients, and children raise
additional ethical concerns because they do not have complete capacity to consent voluntarily.
For example, in the infamous Willowbrook experiments, researchers exposed institutionalized
children with intellectual disabilities to hepatitis (Rothman and Rothman 2005).
In response to these issues, the federal government created regulations that restrict research-
ers’ access to vulnerable populations and require that Institutional Review Boards (IRBs)
Address correspondence to Valerie Leiter, Department of Sociology, Simmons College, 300 The Fenway, Boston,
MA 02115, USA. E-mail: valerie.leiter@simmons.edu
Sociological Spectrum, 35: 26–45, 2015
Copyright #Taylor & Francis Group, LLC
ISSN: 0273-2173 print/1521-0707 online
DOI: 10.1080/02732173.2014.978429
Downloaded by [Valerie Leiter] at 14:57 05 January 2015
scrutinize studies that involve vulnerable populations carefully, subjecting them to more rigorous
review. These regulations have their foundation in the Nuremberg trials after World War II, and
The Belmont Report, in which the U.S. Department of Health and Human Services in 1979 out-
lined ‘‘The Ethical Principles and Guidelines for the Protection of Human Subjects of Research’’
(45 CFR 46). While IRBs do represent a safeguard against unethical research, they have not
solved all of the problems that accompany health researchers’ use of human beings to test the-
ories, drugs, and other treatments. In this paper, we examine three problematic medical studies
involving African American children. All of these studies were conducted during the 1990s, with
the approval of IRBs at major universities and=or medical centers. We analyze academic and
mainstream media accounts of these cases, addressing two research questions: (1) What actors
were involved with implementing these studies and protesting against them, and (2) Were media
accounts in African American venues more critical than the accounts reported through main-
stream outlets, using more negative rhetoric regarding the connection between race and medical
research?
DISTRUST AND RUMORS
African Americans’ distrust of medicine is long-standing, grounded in historical, long-term mis-
treatment and corporeal exploitation of African Americans. Rumors and distrust, expressing
apprehension towards medicine and health research, have descended through generations of oral
history telling, and were grounded initially in the use of slaves and free African Americans for
medical research (Moore and Collins 2002). During the Jim Crow era, rumors circulated widely
about ‘‘night doctors,’’ medical students who were said to steal African American cadavers and
live people for medical research or dissection (Gamble 1997; Moore and Collins 2002:48). Of
course, the infamous Tuskegee Syphilis Study is one of the most documented and notable
breaches of medical ethics in medical research, and continues to haunt biomedicine (Reverby
2000). The United States Public Health Services conducted the experiment from 1932 to
1972, withholding treatment from almost 400 black men until an Associated Press story led
to public outcry (Centers for Disease Control 2012; Bell 2000). The respondents recruited for
the Tuskegee Study were lured in by false promises of free medical care (Moore and Collins
2002). In 1997, President Clinton issued a formal apology for the Tuskegee Study, stating,
‘‘the people who ran the study at Tuskegee diminished the stature of man by abandoning the
most basic ethical precepts. They forgot their pledge to heal and repair’’ (Centers for Disease
Control 1997). In Bad Blood, Jones described the Tuskegee experiment as a ‘‘metaphor of
deceit, conspiracy, malpractice, and neglect, if not out right genocide’’ (1992:38). The study
has achieved mythical status in U.S. culture (Reverby 2001). The Tuskegee experiment, in com-
bination with personal experiences of ‘‘discrimination, indifference, and disrespect’’ may make
African Americans suspicious of medical research (National Institutes of Health 2004).
Contemporary health issues have been analyzed repeatedly using this historical backdrop
(c.f., Jacobs et al. 2006; Kennedy, Mathis, and Woods 2007). For instance, in the early
1970s, Turner and Darity (1973) documented African Americans’ concerns that family planning
was being used against them as a form of genocide; 39%of the African Americans surveyed
believed that ‘‘birth control programs are a plot to eliminate blacks.’’ A survey in the early
1990s found that 35%of black church members thought that AIDS was a form of genocide,
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and an additional 35%were unsure (Epstein 1997). Around that time, rumors circulated by
word-of-mouth and in African American publications that white scientists created AIDS as a
form of African American genocide (Moore and Collins 2002:48). In a 1990 poll, 1 in 10
African Americans believed that HIV was ‘‘deliberately created in a laboratory in order to infect
black people’’ and another 2 in 10 ‘‘thought that it might be so’’ (The AIDS ‘Plot’ Against
Blacks 1992). More recently, the Tuskegee Legacy Project found that 34%of African
Americans in 2003 reported that it was ‘‘very or somewhat likely’’ that AIDS is ‘‘the result
of a government plan to intentionally kill a certain group of people by genocide’’ (Russell
et al. 2011). These health-specific worries dovetail with broader concerns among African
Americans about conspiracy theories involving both malicious and benign neglect (Parsons
et al. 1999; The AIDS ‘Plot’ Against Blacks 1992). African American community leaders
and churchgoers in one study were equally likely to believe in conspiracy theories (Simmons
and Parsons 2005). Popular media contributes to this distrust through the production of
mythic ‘‘knowledge’’ about African Americans and medicine (Wasserman, Flannery, and
Clair 2007).
In addition, some African Americans are distrustful of medical research because researchers
enter their communities, extract information about them, and widely disperse that information
into the majority community, without offering compensation or benefit to the community being
studied (Moorer and Collins 2002). Misunderstandings regarding informed consent also contrib-
ute to African Americans’ distrust of medicine. In one study, African American respondents
understood informed consent as a formality to relinquish their autonomy and as a protection
for the physicians or researchers performing the study from possible legal repercussions
(Corbie-Smith et al. 1999). The technical medical and legal jargon used on informed consent
forms exacerbated African American respondents’ distrust of medicine, which was grounded
in beliefs of widespread exploitation. One participant stated, ‘‘they always use our race as guinea
pigs’’ (Corbie-Smith et al. 1999:540). Among parents of pediatric patients in two other studies,
African Americans were two to three times more likely than white parents to feel that their child
might be ‘‘treated like a guinea pig’’ in a research project (Rajakumar et al. 2009; Shaw et al.
1999). African Americans’ distrust of medicine has deep roots. However, even though African
Americans are more likely than white people to believe in HIV conspiracies, they are signifi-
cantly more willing to participate in HIV trials (Westergaard et al. 2013). And Fisher and
Kalbaugh (2011) found that minorities are overrepresented in phase I clinical trials, in which
there is often no clinical benefit to participants. These studies pose an interesting paradox, as
we would expect that higher distrust would result in lower participation in clinical studies.
METHODS
We conducted an exhaustive survey of U.S. African American and mainstream newspaper and
magazine articles about any medical studies that may have been performed on African Ameri-
cans specifically after the Tuskegee experiment was publicized widely, looking for contempor-
ary cases. Five library databases were consulted initially: Academic Search Complete; General
Reference Center GOLD; Lexis-Nexis Academic; The Massachusetts Newstand; and ProQuest
Historical Newspapers: Boston Globe (1872–1979). Within these databases, we searched for
newspaper and magazine articles. These databases were searched for all articles published
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between 1972 (when the Tuskegee study was exposed publicly) and 2012. The terminology
used in this first round of searches paired (a) ‘‘black,’’ ‘‘African American,’’ or ‘‘race’’ and
(b) ‘‘experimentation’’ ‘‘human subjects’’ ‘‘human experimentation’’ or ‘‘medical research.’’
At this stage, we also relied upon the book Medical Apartheid (Washington 2006) to identify
cases. This initial search process resulted in four cases which publications described as medical
studies involving African American children: HIV clinical drug trials on children in New York
City, a lead abatement experiment on children in Baltimore, and two fenfluramine experiments
in New York City. All four studies took place during the 1990s; no more recent cases were
found. While these studies also included children who were not African American, including
Latino children, the media exposure focused on African American children’s participation.
We excluded one of the fenfluramine studies from these analyses, which examined ADHD,
because it generated no media attention whatsoever, resulting in no articles for analysis. There
were also studies of BiDil (isosorbide and hydralazine) during the same period—BiDil was the
first drug that the Food and Drug Administration approved to be marketed specifically to African
Americans, raising questions about racially-targeted research and treatments (Brody and Hunt
2006; Kahn 2008). We chose to exclude the BiDil studies because they involved adults, while
the other cases all involved children and federal research ethics investigations into possible
ethical lapses in their conduct.
Following this general database search, we conducted a second round of searches, to ensure
that we had a complete set of media pieces that addressed each of these three cases. Using search
terms from the cases (such as ‘‘lead’’ and ‘‘Baltimore;’’ ‘‘HIV’’ and ‘‘orphan;’’ and ‘‘fenflur-
amine’’ and ‘‘experiment’’), we used the databases mentioned above to locate additional articles,
published in both print and online media. In a third round of searches, we used Google to locate
the names of local African American newspapers in New York, Baltimore, and Washington,
D.C., because the three studies that we identified were conducted in or near those cities, and
because local African American newspapers were typically not included in the library databases
that we consulted in the two rounds of searches—those papers’ exclusion from mainstream elec-
tronic databases required that we go a step further in our search than might be typical in content
analyses of media coverage to ensure that we included African American publications in our
analyses. We searched those papers’ archives and used Google again to search for articles on
the studies in those publications, resulting in multiple articles that specifically voiced African
Americans’ concerns. We found articles in three African American magazines: Emerge,
Essence, and Jet, and in African American newspapers such as the New York Amsterdam News
and The Baltimore Afro-American.
Our analyses were conducted using the entire body of articles that we found about the three
studies, which were published in a range of African American and mainstream publications.
Overall, we found 39 articles, 12 on the HIV=AIDS trials, 12 on the fenfluramine study, and
15 on the lead abatement study. It is important to note that these media accounts may not always
tell the whole story, and there may be bias and sensationalizing of children’s experiences. We
categorized articles as ‘‘neutral’’ or ‘‘critical.’’ ‘‘Neutral’’ articles reported problems with the
studies but balanced concerns with justifications of the research performed. ‘‘Critical’’ articles
provided detailed, negative details, highlighting bias and potential harm. We were interested in
comparing the tone and rhetoric of the articles, hypothesizing that African American publica-
tions would publish more negative pieces than mainstream media outlets, contributing to
contemporary distrust of medicine among African Americans.
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MODERN DAY ‘‘EXPERIMENTS’’
All of the studies analyzed here involved African American children who were under the age of
18 at the time that the studies occurred. We did not search specifically for studies involving chil-
dren, as we were seeking all medical experiments that involved African Americans in particular.
While the HIV drug trials were clinical trials, the lead abatement and fenfluramine studies were
experiments aimed at health policy interventions (lead) and theories about violence (fenflura-
mine). The child-focused nature of these studies therefore add an additional wrinkle to our analy-
sis of race and distrust, because they involved minors who were not old enough to give consent
to participate in research studies or even typical medical treatment. All three studies also took
place during the 1990s. This timing is important because IRBs reviewed and approved all three
studies, giving researchers permission to implement the procedures described below.
HIV Trials
In the late 1980s and early 1990s, HIV=AIDS became a major cause of death of children. In
New York City in 1988, it was a leading cause of death among African American and Latino
children ages one to four and the impact was expected to become more severe as increased num-
bers of children were born with HIV (Centers for Disease Control 1991; Chu et al. 1991). In
response, activists, teaching hospitals, faith-based communities and pharmaceutical companies
rallied to offer drug treatment to children. New York City was densely populated with
HIV-positive foster and orphaned children (Zook 2007).
In March 1989, a groundbreaking program in New York City extended HIV=AIDS-treatment
to orphaned children at the Incarnation Children’s Center (ICC). The ICC, a residential treatment
facility, provided treatment and services to 165 HIV-positive orphan infants and young children.
The ICC’s mission was to decrease the startling numbers of children who were dying from
AIDS in New York City. Stephen W. Nicholas, M.D., and Elaine J. Abrams, M.D., affiliates
of Columbia University, founded New York City’s ICC in Washington Heights, which was
administered by the Catholic Charities, Columbia University Medical Center, the Catholic Arch-
diocese, Children’s Services and the NY State Department of Health. The ICC’s outreach efforts
included HIV-infected children from six NYC hospitals: Columbia-Presbyterian, Harlem Hospi-
tal, New York Hospital, St. Luke’s=Roosevelt, Kings Country Hospital in Brooklyn, and SUNY
and additional outpatient clinics throughout the five boroughs and Westchester (Washington
2006). Medical institutions across New York City allied to address this pivotal public health
concern in New York City. At the time, it was the only residence for HIV-positive children.
Widespread support included a visit from Princess Diana, which caused a sharp increase in
the number of foster families willing to take in ICC children (Nicholas and Abrams 2002).
Over time, the ICC became a source of child participants for HIV trials (Washington 2006).
Some of the researchers involved in the studies argued that these studies were the ‘‘exact
opposite’’ of the Tuskegee study: ‘‘African Americans who in the Tuskegee setting had been
discriminated against by not receiving treatment—here those children were advocated for, and
received the treatment ...’’ (Mogul 2009). Teaching hospitals accessed the children at ICC
through channels opened by New York State. The children used in the trials included
HIV-positive orphans born to HIV-positive mothers, whose parents were deceased or whose
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parents the courts deemed unfit to care for their child (Washington 2006). These children there-
fore lived under the care of the state as guardian due to their status as orphans or foster children,
living in a ‘‘total institution’’ (Goffman 1961), separate from family and other social institutions.
If a child was marked an orphan or foster child, the State of New York held responsibility for
informed consent. As the clinical trials were mounted, New York State created the Pediatric
AIDS Clinical Trials Group (PACTG) to protect the rights of children. The PACTG, the
National Institute of Child Health and Human Development, and New York’s Administration
for Children’s Services approved Columbia University drug trials. Between 1989 and 2001,
18 drugs were tried on children from the ICC, and between 1997 and 2003, the ICC allowed
researchers to conduct 36 clinical studies under its supervision (Montero 2004; Zook 2007).
‘‘Officials estimated that 5 to 10 percent of the 13,878 children enrolled in pediatric AIDS stu-
dies funded by NIH since the late 1980s were in foster care’’ (Solomon 2005). More than four
dozen studies were conducted, spread across at least seven states, including Illinois, Louisiana,
Maryland, New York, North Carolina, Colorado, and Texas (Solomon 2005). The studies at the
ICC were halted in 2002, but an archdiocese spokesman ‘‘did not know why’’ (Montero 2004).
Once the HIV trials became public in New York City, they generated pushback from child
advocates, activists, local politicians, and individual activists who questioned the effectiveness
of the HIV medications prescribed to children. Some argued that the experimental drugs inflicted
more harm to the children than was justified by the groundbreaking work produced from the
trials. In 2004, The BBC broadcast a documentary about ‘‘New York’s HIV experiment,’’ called
Guinea Pig Kids (2004). The documentary was highly critical of the studies, and highlighted the
experiences of Jacqueline Hoerger, an HIV pediatric nurse formerly at ICC and the foster mother
of two HIV-positive children. An article by Essence in 2007 described how Hoerger discontin-
ued her children’s cocktail of HIV prescriptions after they developed side effects (Zook 2007).
Hoerger supervised her children before and after the medication reduction, researched the HIV
medications, and sought additional professional assistance. She stated that her children’s health
improved after two months without the medications. Hoerger received an unexpected visit from
social workers in 2000, who removed the children from her home and issued her a ‘‘medical
administration’’ form as explanation for the children’s removal (Montero 2004; Zook
2007:199). Hoerger was charged with medical child abuse, although the charge was dropped
one year later. The BBC’s ‘‘Guinea Pig Kids’’ video remains available online, even though
the website now states that following a complaint, the BBC’s Editorial Complaints Unit ‘‘has
identified serious failings with this program and ruled that some of the online material based
on it was misleading.’’
Advocates, activists, and politicians expressed concerns about the serious side effects
developed by children (Montero 2004; Washington 2006). At the end of 2004, activists from
the African American community and the December 12th movement (a nongovernmental
organization that focuses on African American human rights in the United States) held a
protest outside of the ICC, accusing the center of ‘‘allowing HIV-positive minors under its
care to be used for medical experiments’’ (Acosta 2004). In 2005, Councilmen Bill Perkins
(D-Harlem) and Charles Barron (D-East New York) requested that the New York City
Department of Investigation look into the trials. In May 2005, an advocacy group called
the Alliance for Human Research Protection (AHRP) testified before the Committee on Ways
and Means Hearing on Protections for Foster Children Enrolled in Clinical Trials. The AHRP
had filed a complaint in March 2004 with the Food and Drug Administration (FDA) and the
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federal Office of Human Research Protection (OHRP), stating that they ‘‘had reason to believe
that the experiments were unethical, illegal, and coercive—and that federal regulations have
been violated’’ (AHRP 2005).
Both Essence (an African American magazine) and the New York Post reported that OHRP
wrote to Columbia-Presbyterian Medical Center about the alleged violations involving foster
children. The OHRP informed Columbia that they violated federal regulations in four cases
involving foster children who had AIDS or were HIV-positive, stating that the IRB had ‘‘failed
to obtain sufficient information’’ regarding the selection of foster children as participants, and
regarding the process of obtaining parents’ or guardians’ consent, and regarding safeguards
for their enrollment (OHRP 2006; Scott 2005; Zook 2007). In essence, the IRB had not fulfilled
federal guidelines regarding respect for persons (National Commission for the Protection of
Human Subjects of Biomedical and Behavioral Research 1979), as applied through informed
consent procedures. Columbia University Medical Center and New York Presbyterian Hospital
responded to these findings by revising their educational interventions with IRB members and
investigators and instituting new procedures regarding the inclusion of children, especially foster
children (OHRP 2006). The New York City Administration for Children’s Services responded to
the OHRP’s initial findings in 2005 by hiring the Vera Institute of Justice to investigate the city’s
handling of the participants who were in foster care.
The Vera Institute found evidence ‘‘that supported some concerns about the participation of
foster children and their families in clinical trials. This evidence includes violations of state reg-
ulations, Children’s Services’ own policies for clinical trial review and enrollment, and federal
regulations for protecting human subjects’’ (Ross and Lifflander 2009:vii). In particular, they
found that ‘‘parental rights were not respected in every case,’’ there were not detailed policy
guidelines regarding clinical trials policy in the 1980s and 1990s, ‘‘not all child welfare and
clinical trial research staff knew the regulations and procedures regarding the participation of
foster children in clinical trials,’’ and there was ‘‘little evidence that community constituents,
including parent and child advocacy organizations, were involved’’ (Ross and Lifflander
2009:vii–ix). They did not find that any of the children were harmed through their participation,
but stated clearly in the report that they did not have complete access to the participating
children’s medical records.
Lead Paint Abatement Repair and Maintenance Study
An article in The Baltimore Afro-American in September of 1993 warned parents of the ‘‘ever
present menace’’ of lead poisoning, which is credited as the ‘‘number one environmental public
health problem affecting young children’’ (Battle 1993:A10). In the very next sentence, the
Kennedy Krieger Institute (KKI) in Baltimore is described as leading ‘‘the effort to rid society
of lead poisoning.’’ Doctors at the center, including ‘‘an international expert in lead poisoning’’
were cited, as was a mother who sang praises of the Institute. Her three young children had been
treated for lead poisoning and the Institute was trying to help her find a lead-free home in which
to live. ‘‘Ms. Reedy considers the institute very special to her family. ‘‘My son Thomas wasn’t
really talking, and they got him into a speech program, said Reedy. He’s also in a toddler pro-
gram. They really do help you here and they really care about the children,’’ she said. The Public
Relations director of the Institute wraps up the article, stating that ‘‘With this 20 year reputation,
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and a dedicated and loving staff, we can help many, many, children. We will continue on the
road to stamp out lead poisoning once and for all,’’ he concluded.
This article is remarkable not just for its earnest and wholehearted endorsement of the KKI,
but because it was printed when the KKI was conducting a lead abatement experiment on
Baltimore children and seems designed to create trust within the African American community
in that city. The international expert who was cited in the article was one of the key researchers
behind the lead experiment, which ran from 1993 to 1995. The KKI’s study placed children into
108 homes in 5 groups: 3 treatment groups with varying degrees of lead abatement (ranging
from minimal in which peeling paint was repaired, to more extensive painting and use of floor
covering and plasterboard to encapsulate lead, to all of the above plus window replacement), and
2 comparison groups (Farfel and Chisholm 1991). KKI recruited children who were living in
inner city housing into the study; an estimated 40–50%of children living in these high-risk areas
had ‘‘moderate’’ blood lead levels (Pollak 2002). The children were predominantly African
American (Farfel and Chisholm 1991; Pollak 2004; Williams 2011). By design, some children
were meant to live in housing with incomplete lead removal, to test the effectiveness of various
levels of lead abatement, while their blood levels were tested periodically to measure the effect
of partial abatement. The Environmental Protection Agency (EPA) funded and approved the
abatement and the study, which was reviewed by the Joint Committee on Clinical Investigation
of the Johns Hopkins University School of Medicine and the Johns Hopkins Hospital
(Kopelman, 2002).
The families of Ericka Grimes and Myron Higgins, two of the children in the study, pursued
the researchers in court, saying that the researchers did not inform them fully of the risks of
participation and should have shared the results of the periodic blood-lead tests with them so that
they could have taken action and prevented further harm to their children. These cases were
dismissed in trial court, but the families pursued their cases to the appeals level. At the appeals
level, the researchers argued that they had no duty of care to ‘‘an institutional volunteer’’ (Grimes
v. Kennedy Krieger Institute, Inc., 782 A.2d 832 (Md. 2001). However, the informed consent
form contradicted that position. It stated, ‘‘We are also doing free blood-lead testing of children
aged 6 months to 7 years, up to 8 or 9 times over the next two years.’’ Under ‘‘benefits,’’ the
informed consent form stated that, ‘‘We would provide you with specific blood-lead results.
We would contact you to discuss a summary of house tests results and steps that you could take
to reduce any risks of exposure’’ (Grimes v. Kennedy Krieger Institute, Inc.). These statements
implied that KKI was monitoring the children, with the aim of reducing exposure.
In August 2001, the Court of Appeals overturned the earlier decision, Grimes v. Kennedy
Krieger Institute, Inc., finding for the families. In a scathing opinion, the court mentioned the
Nazis’ experiments on Jews during the Holocaust and said that this study ‘‘presents similar prob-
lems as those in the Tuskegee Syphilis Study conducted from 1932 until 1972 ...the intentional
exposure of soldiers to radiation in the 1940s and 50s ...the tests involving the exposure of
Navajo minors to radiation ...the secret administration of LSD to soldiers by the CIA and
the Army in the 1950s and 60s ...and notorious use of ‘‘plague bombs’’ by the Japanese mili-
tary in World War II.’’ The Court concluded, ‘‘It is clear to this Court that the scientific and
medical communities cannot be permitted to assume sole authority to determine ultimately what
is right and appropriate in respect to research projects involving young children free of the lim-
itations and consequences of the application of Maryland law. The Institutional Review Boards,
IRBs, are, primarily, in-house organs.’’ In this instance, the Court said that the IRB ‘‘abdicated
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its responsibility’’ to protect human subjects, by encouraging the researchers to misrepresent the
study as therapeutic so that it would be subject to a lower standard of regulation.
In the conclusion of the Grimes decision, the court stated that ‘‘We hold that in Maryland a
parent, appropriate relative, or other applicable surrogate, cannot consent to the participation of
a child or other person under legal disability in nontherapeutic research or studies in which
there is any risk of injury or damage to the health of the subject.’’ This statement seemed
to prohibit any nontherapeutic research involving children, that is, research that would
not benefit child participants directly. The Association of American Medical Colleges, the
Association of American Universities, Johns Hopkins University, and the University of
Maryland all asked the Court of Appeals to reconsider its decision because the decision
seemed to eliminate research on individuals who could not legally consent to participation
(who are described as having a ‘‘legal disability’’). Their letter said that ‘‘A rule prohibiting
nontherapeutic research or studies in which there is any risk of injury would prohibit virtually
all medical and public health research involving children and other persons under a legal
disability’’ (Kopelman 2002:41). The court rephrased its decision later to state that nonthera-
peutic studies with more than minimal risk could not be conducted (Kopelman 2006). In this
instance, the Court did not consider the children who might get lead poisoning to have a
‘‘condition,’’ deeming the project to be nontherapeutic.
KKI eventually settled the suit out of court (Kopelman 2006), but the case lives on as a con-
temporary classic example of tension between the goals of increasing knowledge and protecting
human subjects (Glantz 2002). In 2002, the Office of Human Research Protections (OHRP)
found that the Johns Hopkins University IRB had improperly reviewed the abatement study
as an expedited review when the study involved more than minimal risk. In this regard, the
IRB did not adequately address respect for persons through the use of informed consent, as
required under federal guidelines for human subjects research (National Commission for the Pro-
tection of Human Subjects of Biomedical and Behavioral Research 1979). The IRB was required
to take corrective action, by changing ‘‘its procedures to require strict adherence to the require-
ments for expedited review of protocols,’’ creating new IRB application forms that contain
additional information on consent, and requiring that the IRB include at least one pediatrician
as a member (Office of Human Research Protections 2002).
Fenfluramine Experiment
The U.S. Food and Drug Administration (FDA) approved fenfluramine for short-term use as an
appetite suppressant in the treatment of obesity in 1973. In the 1990s, physicians sometimes
paired the drug with phentermine, resulting in many people taking ‘‘fen-phen’’ for weight loss
(U.S. Food and Drug Administration 2012). Also early in the 1990s, a team of researchers in
New York City explored fenfluramine’s effects on serotonin receptors through experiments
on children, looking for biological causes of aggression.
Researchers with affiliations with the Department of Child and Adolescent Psychiatry, the
New York State Psychiatric Institute (NYSPI), and the College of Physicians and Surgeons
of Columbia University conducted the fenfluramine study. The subjects for this study had 3
key characteristics in common: they were 6 to 10 years old; they lived in Manhattan, Brooklyn
or the Bronx; and they had an older brother who had been adjudicated as a juvenile delinquent
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between November 1, 1991 and October 31, 1993. The boys were recruited through court
records; juvenile courts disclosed information about adjudicated juveniles’ families to the
Lowenstein Center for the Study and Prevention of Disruptive Disorders at Columbia University.
Thirty-four boys were selected for the study, which ran between 1993 and 1996: 18 were
African American, 13 were Latino, and 3 were white (Pines et al. 1996; Pines et al. 1997).
The NYSPI’s Deputy Director at the time justified the racial and ethnic composition of the sam-
ple, stating that, ‘‘If our institute was located in Iowa [the subjects] would all have been white’’
(Schoofs 1998). In the initial assessment, the researchers took blood samples from the boys dur-
ing an office visit and ‘‘each subject received an assessment of psychopathology’’ during a
home visit (Pines et al. 1996). For the ‘‘fenfluramine challenge’’ portion of the study, the boys
were taken off all medications for a month and fasted from the night before until the end of the
challenge. The ‘‘challenge’’ involved inserting an intravenous catheter into the boys from
8:30 a.m. to 2:00 p.m., administering a 10 mg dose of oral fenfluramine hydrochloride at
10 a.m., and taking blood samples at 9:45 and 10:00 a.m. and hourly thereafter until 2:00 p.m.
(Pines et al. 1997). Families provided consent to participate in the study. Children received a
$100 Toys ‘‘R’’ Us gift certificate, plus $230 for participating (Allen 1998).
In the fall of 1997, the FDA withdrew fenfluramine suddenly from the market because it was
found to contribute to heart valve problems (U.S. Food and Drug Administration 2012). In
December of that year, a group called Disability Advocates Inc. lodged a complaint against
the NYSPI for conducting ‘‘non-therapeutic experiments’’ on the boys (Shamoo and Tauer
2002:145). On April 18, 1998, The New York Post published the first media article on the fen-
fluramine studies, kicking off a flurry of negative articles. This first article reported that the Law
Departments chief for Family Court approved the release of Family Court records to researchers
at the NYSPI (Montero 1998). In a statement, the NYSPI claimed that it ‘‘acted appropriately,
ethically, legally and morally,’’ and that ‘‘The dose of fenfluramine used in these studies of
aggressive children ...was administered on a one-time-only basis by mouth’’ (Montero 1998:2).
Other local papers picked up the story, articulating African Americans’ concerns. Some of
the most critical coverage published in the New York Amsterdam News, an African American
newspaper. Articles in that paper cited the Rev. Al Sharpton, who claimed that ‘‘It’s about genet-
ics ...If they are experimenting on the younger brothers of juvenile delinquents who have been
accused of a crime, then where are you?’’ (Boyd 1998a). Then-State Senator David Paterson is
also quoted as stating, ‘‘I was horrified to hear that our children may have been used as human
guinea pigs,’’ and the article goes on to mention a forum two months earlier, on ‘‘Beyond
the Tuskegee Experiment—Race and Scientific Experimentation in the Black Community,’’
which included discussion of this fenfluramine study (Boyd 1998a:1). An article in the New York
Daily News a few days later reported on a Brooklyn mother of one of the boys in the first fen-
fluramine study, which mentions the generous participation incentives, and that ‘‘...she figured
that she had to cooperate with the letter [inviting them to participate] because an older son was
incarcerated on a robbery conviction’’ (Allen 1998). A Village Voice article reported that the
informed consent form for the first fenfluramine study stated that the researchers were studying
‘‘the physical and emotional well-being of children whose families have been involved in the
court system.’’ According to that article, a grant application to NIMH specifically described
the study as ‘‘limited only to Black and Hispanic boys,’’ and that it was ‘‘restricted to boys
of two major minority populations in New York City because these restrictions maximize the
sample’s risk for developing disruptive behaviors=conduct disorder’’ (Schoofs 1998).
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In July of 1998, 150 people attended a forum on the initial fenfluramine study was held at
the Adam Clayton Powell Jr. State Office Building in Harlem. Keith Wright, at Democratic
Assemblyman from Manhattan stated, ‘‘The experiment reminds me of the Tuskegee Experi-
ment in which doctors tested syphilis on unsuspecting Black men. It is no wonder some Black
folks distrust doctors’’ (Moorer 1998:17). Frank Morales, of the Coalition Against the Violence
Initiative (an organization that critiqued government-funded studies linking race and violence),
described the study as a ‘‘form of eugenics that was practiced by Nazi doctors,’’ in its emphasis
on biological over social factors (Moorer 1998:17). A later article in the New York Amsterdam
News called the children in this experiment ‘‘guinea pigs’’ (Boyd 1998b), as did a New York
Post article several years later (Montero 2004).
This public outcry prompted the Office of Protection from Research Risks (OPRR) at the
National Institutes of Health (NIH) to review the study (Shamoo and Taurer 2002). The OPRR
found that the NYSPI had reviewed its study properly, because the IRB acknowledged that it
involved greater than minimal risk to participants and did not provide any direct benefit to them
(OPRR 1999c, cited in Shamoo and Tauer 2002). ‘‘OPRR concluded that the small risks were
justified because, as required by federal regulations, the research has the potential to answer
questions about the children’s ‘‘conditions’’ (Weiss 1999). The NYSPI’s director at the time
‘‘...said yesterday that he and his colleagues had explained to the OPRR that younger siblings
of delinquents have a condition in that they’re ‘‘at increased risk’’ of antisocial and violent
behavior as adults, and that some of them had already been ‘‘in trouble’’ at school’’ (Weiss
1999). The increased chance of getting into trouble was described as a condition or disorder
(Weiss 1998), thereby medicalizing the risk of violence. Patient advocacy groups complained
that, ‘‘the Federal investigation looked only at paperwork compliance in a narrow procedural
area, not at the substance of how the children were chosen or what had been done with
them. ...’’ (Bernstein 1999), raising issues of respect for persons and beneficence (the
philosophy of ‘‘do no harm’’ while maximizing benefits).
ANALYSIS OF IMPLEMENTING AND PROTESTING ACTORS
Each of the experiments was the product of multiple implementing actors, who worked together
to produce the studies, often across institutions and=or levels of government. Actors that
protested the studies later came almost entirely from the local communities where the child part-
icipants lived. Here we examine the actors involved and the stories that media accounts told, and
compare media accounts to federal investigation findings.
Actors
The top of Table 1shows the implementing actors, who played a role in making each study hap-
pen. These actors often collaborated with each other, and include funding agencies, medical
institutions, and state and local agencies. Federal agencies funded each of the three cases. Promi-
nent medical institutions were also involved in each case. Columbia University was involved in
the HIV trials and in one of the fenfluramine studies, and a Johns Hopkins IRB approved the
lead abatement study. In addition to federal agencies, state and=or local agencies were involved
in the HIV and lead cases. State agencies participated in the implementation of both the HIV
36 V. LEITER AND S. HERMAN
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trials and the lead study, while local agencies participated in the HIV trials and the lead abate-
ment study. The bottom of Table 1shows the protesting actors, individuals and groups who
reacted to the studies that implementing actors had conducted. Protesting actors were largely
local community members, including parents and children, local and state politicians, faith-based
actors, and other advocates. Eventually, investigating groups at the federal level also responded
in each case, as a result of negative media stories about these studies.
In each of the three cases, we see powerful medical institutions playing key implementing
roles, a combination of federal funding agencies, prestigious universities, and state and local
TABLE 1
Implementing and Protesting Actors, by Case
Actors HIV trials Lead abatement Fenfluramine
Implementing
Federal funding agencies National Institute of
Allergy and Infectious
Diseases
Environmental Protection
Agency
National Institute of
Mental Health (both
studies)
Medical institutions Columbia University
Medical Center
Kennedy Krieger
Institute; Johns Hopkins
University
Columbia University
State agencies NYS Admin. for
Children’s Services;
NYS Dept. of Health
Maryland Dept. of
Housing and
Community
Development
None
Local agencies Incarnation Children’s
Center (private)
Baltimore City Health
Department
None
Other implementers Catholic Church None None
Protesting
Parents Jacqueline Hoerger (foster
mother)
Catina Higgins; Viola
Hughes (mothers)
Clarisse Johnson (mother)
Local and state politicians NYC Council members None State Senator;
Assemblyman; City
Councilor
Faith-based responders None None Rev. Al Sharpton; Rev.
John Vaughn
Other organizations Alliance for Human
Research Protection
None International Center for
the Study of Psychiatry
and Psychology; the
Committee Against
Abuse Research;
Citizens for
Responsible Care in
Psychiatric Research;
the Coalition Against
the Violence Initiative;
and the Alliance for
Human Research
Protection
Investigating federal groups OHRP; House Committee
on Ways and Means
OHRP OHRP
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agencies. Community members of color constituted most of the protesting actors. Parents pro-
tested their children’s treatment, and in the lead and fenfluramine studies they sued the research-
ers involved. (The lead suit was successful but the fenfluramine suit was not.) In both the HIV
trials and fenfluramine cases, local politicians of color came forward to express concern about
what they were hearing about the cases. In the fenfluramine case, three African American
Democrats who were representing Manhattan at the time came forward: State Senator David
Paterson, Assemblyman Keith Wright, and City Councilor Bill Perkins.
Faith-based responders were vocal in the fenfluramine case. Reverend Al Sharpton and
Reverend John Vaughn came forward to question why it was largely African American and
Latino children who were recruited. National organizations posed similar questions in both
the HIV trials and the fenfluramine studies. A range of advocacy organizations that were critical
of research responded negatively to the fenfluramine study, including the International Center
for the Study of Psychiatry and Psychology, the Committee Against Abuse Research, Citizens
for Responsible Care in Psychiatric Research, the Coalition Against the Violence Initiative, and
the Alliance for Human Research Protection. These organizational actors, in combination with
the community-level actors, made sufficient noise about these studies to garner outside attention.
In the HIV case, the House Committee on Ways and Means held a hearing on ‘‘Protections of
Foster Children Enrolled in Clinical Trials,’’ and the General Welfare Committee of the
New York City Council and the New York State Assembly Standing Committees on Health
and Children and Families also held hearings in 2005 (Ross and Lifflander 2009). There was
significant public outcry in each of the cases, resulting in federal investigations.
In all three cases, the Office of Protection from Research Risks (OPRR), which was later
renamed the Office of Human Research Projection (OHRP), stepped in to investigate allega-
tions of violations of federal regulations on the use of human subjects in research. In the fen-
fluramine study, the OPRR found that the ‘‘small risks were justified,’’ even though the media
accounts of this study were vociferous in their criticisms. Advocacy groups complained that
this investigation was too narrow, looking at paperwork compliance rather than investigating
the children’s treatment (Bernstein 1999). In media accounts, protesting actors argued that this
study violated all three major ethical principles in human subjects research: respect for per-
sons, beneficence, and justice. Respect for persons was violated by the potentially nonvolun-
tary nature of families’ and boys’ participation, if they were afraid of retaliation against the
older brothers. Beneficence was an issue from their perspective because they believed that
the potential harm outweighed the benefits of the research, which were unclear. Unequal dis-
tribution of the costs of research to African American (and Latino) boys raised issues of jus-
tice. In the HIV=AIDS studies, the OHRP found that the IRB did not obtain sufficient
information for foster child participants, and that the process of gaining parents’ or guardians’
consent was problematic in terms of having safeguards for their enrollment, both problems
regarding respect for persons. In the lead study, the OHRP found that the Johns Hopkins
University IRB had improperly reviewed the study as an expedited review when it involved
more than minimal risk and was therefore ineligible for that lighter level of review. (In Grimes
v. Kennedy Krieger Institute, Inc., the researchers were also criticized directly for violating the
principle of respect for persons, due to misleading informed consent statements that inferred
that the children would receive treatment if they had elevated lead levels.) While the OHRP
did find the IRBs at fault in these studies, the investigations largely focused at the IRB level,
and did not always address the conduct of the researchers who implemented the studies.
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Therefore, these investigations did not address protesting actors’ concerns about informed con-
sent, the selection of subjects, and the risk that children experienced as participants, all issues
that are supposed to be addressed through the regulation of human subjects research (National
Commission for the Protection of Human Subjects of Biomedical and Behavioral Research
1979). The OHRP’s reach therefore stopped at the IRB level, while advocates mainly targeted
researchers’ behavior directly.
COMPARISON OF AFRICAN AMERICAN VERSUS MAINSTREAM COVERAGE
Turning to our second research question, we analyze media coverage of these studies, to see if
African American accounts were more critical than the accounts reported through mainstream
outlets, using more negative rhetoric regarding race and medical research. Overall, there were
not substantial differences in the tone and rhetoric of African American and mainstream pieces
about the studies. Both African American and mainstream media outlets published stories that
criticized the studies; there were only two African American publications that took a neutral pos-
ition on any of the studies, both on the HIV trials (see Table 2). Six articles published mixed or
neutral coverage. An early, brief blurb published in Essence, in an article on ‘‘the latest urban
legends,’’ and stated that while many of the children in the studies were Black and rules for pedi-
atric drug trials were violated, the children received access to treatment not available elsewhere
(Wright 2005). Likewise, an article in the Harlem World Magazine explained that while there
were issues with the studies, children may have benefited (Rodriguez 2009). These pieces were
similar to articles on the AP Wire (Solomon 2005), WNYC News (Mogul and Rodriguez 2009),
CBS News (Solomon 2005) and The New York Times (Scott 2005), which pointed out that
restricting children from the HIV trials at that time would have been a form of discrimination,
as the experimental drugs offered the only hope of surviving. A total of six articles provided
critical coverage of the HIV trials. A ‘‘special report’’ in Essence (a national African American
magazine) expressed real distrust in the studies, citing several protesting actors, including family
members of the children (Zook 2007). An article in El Diario=La Prensa, a Latino paper, also
expressed worry, covering a community protest. Another four articles, published in a wide range
of outlets such as the New York Post (Montero 2004; Soltis 2005), The Village Voice (Dwoskin
2009), and the BBC (Doran 2004), also criticized the lack of protection for children in the HIV
trials. The critical coverage in Essence and El Diario=La Prensa was similar to that provided in
more mainstream outlets.
TABLE 2
Media Articles by Case and Tone of Coverage (N¼39)
HIV Lead abatement Fenfluramine
Type of outlet Neutral Negative Neutral Negative Neutral Negative
African American 210103
Mainstream 449509
Other racial=ethnic 010000
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Of the 15 articles published on the Baltimore lead study, 9 were neutral and 6 were critical.
Six of the neutral articles were published by the Baltimore Sun. Those articles took two main
forms: they mentioned the families’ lawsuits or court statements that found for the families then
countered with statements by the researchers, neutralizing the legal cases, or justified the research
outright. The articles that justified the research minimized the sense of risk, saying that the
children in the study were already at risk for lead exposure, and that the study resulted in
knowledge that informed lead abatement policy that reduced risk for children across Baltimore
(c.f. Bor 2001; Ryan 2001). The other neutral media coverage mentioned the lawsuits but then
acknowledged the benefits of that knowledge as well (Portero 2011; Scocca 2001; Middleton). Of
the six critical pieces of coverage, two were in The New York Times, two in the Washington Post,
one in the Baltimore City Paper, and the last was in Colorlines: News for Action. All covered the
lawsuits’ findings against the researchers. The Colorlines piece mentions ‘‘Black children’’ in the
title of the story, and one of The New York Times articles includes the phrase ‘‘racial bias’’ in its
title. The Colorlines piece was the only coverage that we located in an African American media
outlet but its critical stance was matched by the coverage in national papers.
All 12 of the pieces published on the fenfluramine study were negative, many of them racially
charged. Articles in the New York Amsterdam News, a local African American paper express
‘‘outrage’’ over studies involving black children and ask ‘‘Our Children—Whose Guinea
Pigs?’’ (Moorer 1998; Boyd 1998b). The Washington Post and The New York Times also
weighed in, with one Washington Post piece describing the study as ‘‘medical research run
amok’’ (Weiss 1998). Other New York City daily papers joined in the critical chorus, question-
ing the boys’ participation in the study, in terms of how they were recruited, and the risks that
they experienced with no clinical benefit. This study was portrayed as a medical experiment with
no potential benefit and potential harm to the child participants.
Overall, we found that while African American media outlets were largely critical of these
studies, and allowed African American family members, community members, and politicians
the opportunity to voice their concerns, their critical coverage was largely matched in tone
and content with larger, more mainstream publications, most notably the Washington Post
and The New York Times. Negative publicity was therefore widespread, and not contained within
African American communities where the studies were conducted. African American media out-
lets were several voices among many who questioned the use of children of color in these medi-
cal studies and gave credence to protesting actors’ concerns about the ethics of the studies that
were conducted.
CONCLUSION
Our analysis of these studies raises questions regarding inclusion, exclusion, and targeting spe-
cific populations for medical research. These questions are partially about race, but as a result of
the cases that emerged from our search, they are also about the participation of children in medi-
cal research. Over the past few decades, advocacy groups have successfully challenged the val-
idity of medical studies that rely solely upon white, male, adult participants, leading to reforms
to diversify research populations (Epstein 2008b). In March 1994, the NIH issued a policy on the
inclusion of women and minorities as subjects of clinical research studies (NIH 1994), requiring
researchers to make a concerted effort to include these populations in their research. Since then,
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there has also been a nationwide push to include children in pharmaceutical research. The U.S.
Food and Drug Administration (FDA) Modernization Act of 1997 (Public Law 105-115), the
Best Pharmaceuticals for Children Act of 2002 (Public Law 107-85; revised in 2007 as Public
Law 110-85), and the Pediatric Research Equity Act of 2003) have spurred significant interest in
including children in drug research trials. In 2010, the American Academy of Pediatrics’
Committee on Drugs and Committee on Pediatric Research issued a joint policy statement that
recognized the need for equity by involving children in research, but restated the need for
researchers to uphold their obligations to provide additional protections to children as a vulner-
able population (Shaddy et al. 2010).
Children remain ‘‘hard cases’’ in medical experiments, as the authors of the Belmont Report
foresaw several decades ago:
Effective ways of treating childhood diseases and fostering healthy development are benefits that
serve to justify research involving children—even when individual research subjects are not direct
beneficiaries .... A difficult ethical problem remains, for example, about research that presents more
than minimal risk without immediate prospect of direct benefit to the children involved. Some have
argued that such research is inadmissible, while others have pointed out that this limit would rule out
much research promising great benefit to children in the future. (National Commission for the
Protection of Human Subjects of Biomedical and Behavioral Research 1979)
Since the studies explored here were conducted, there has been a concerted effort to improve
protection for research subjects, especially through IRBs (Steinbrook 2002). Yet IRBs may still
not be completely prepared to address medical studies involving children. There were problems
with each of the three studies analyzed here, particularly regarding informed consent. Stroustrup,
Kornetsky, and Joffe (2008) found that while most IRB members in their study reported
that they were ‘‘well prepared’’ or ‘‘very well prepared’’ to perform IRB reviews of studies with
pediatric populations, the median score was one correct question out of five multiple choice
questions posed. Members who had received training on pediatric issues did score higher, sug-
gesting that more specific IRB training of this nature may be needed to address children’s
increased participation in medical research. Increased participation must be met by adequate
protections (Field and Berhman 2004).
Race remains an important part of our analyses here. We went looking for post-Tuskegee stu-
dies involving African American participants, and found three studies that involved African
American children. These studies serve as indicators that race remains a factor in medical
research. Health disparities by race persist in general in U.S. society, in part due to institutiona-
lized racism (Williams 2012), and medical research is one context in which individuals may be
treated differentially by race. In each instance here, the participants were poor, urban children of
color, African American, and Latino. These cases have become our modern ‘‘Tuskegees.’’
Eighty years after the start of the Tuskegee study, we must still maintain our vigilance to ensure
human rights protections in health research both in the United States and elsewhere as biome-
dical research increasingly takes place transnationally (Cook and Jackson 2012; Epstein
2008a). It was not just African American media outlets that told these problematic scientific
tales. Mainstream media repeatedly called attention to ethical problems with the treatment of
children of color in medical studies, suggesting that the seeds of distrust in biomedicine are
broadcast widely in the United States today.
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FUNDING
This research was supported by a William T. Grant Foundation Scholars award.
AUTHOR NOTES
Valerie Leiter is Professor of Sociology and Co-Chair of the Institutional Review Board at
Simmons College. Her work focuses on children and youth with disabilities, medicalization,
and women’s health. She is the author of Their Time Has Come: Youth with Disabilities on
the Cusp of Adulthood and the co-editor (with Peter Conrad) of The Sociology of Health &
Illness: Critical Perspectives (9th edition).
Sarah Herman is a graduate of Simmons College, with a double major in Sociology and
Women’s and Gender Studies. She has published pieces on food justice, Monsanto, and Rikers
Island in The Boston Occupier.
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... Early in our research, we found it interesting that the "anti-fertility" measures later described to the public in phrases such as "family planning" and "planned parenthood" were established right at the time that the lethal Tuskegee syphilis experiment was concluded [24,25,[55][56][57]. Add to that the fact that the UN and its subsidiaries (WHO/UNICEF, etc.) have been funded largely by US taxes from the beginning in 1945 and that the UN is funded now at an estimated $10 billion per year of US money [58][59][60][61]. ...
Data
Full-text available
This addendum to “HCG found in WHO tetanus vaccine in Kenya raises concern in the developing world” (published October 28, 2017 by OALibJ) addresses arguments claiming to discredit it from John Broughall, a retired microbiologist, and from an unnamed person (or persons) going by the pseudonym “The Original Skeptical Raptor” (hereafter, “Raptor”). Our paper [1], hereinafter referred to as the “hCG-paper”, judging from the Web of Science and PubMed databases, is the first peer-reviewed scholarly work showing the scope of the WHO anti-fertility program focusing on “less developed countries” from 1972 to the present: (1) It examines official policy statements from the UN’s largest donor nation dating from 1975 about the perceived need for “far greater efforts at fertility control” especially in “less developed countries” [2,3]. (2) It documents the stream of published research in that program directly or indirectly sponsored by the WHO. (3) It compares the stepped-up dosage schedule used by the WHO in the Kenya 2013-2015 vaccination campaign which was appropriate to their “birth-control” vaccine but radically different from any previously published schedule for ordinary tetanus vaccine. (4) It analyzes and documents the sources of laboratory data from seven distinct WHO accredited laboratories finding βhCG in at least one-third of the samples of vaccine actually collected at the 2014 administration sites. (5) It reveals the convergence of all the foregoing sources of information supporting the charge of the Kenya Catholic Doctors Association leveled against the WHO [4]. A certain microbiologist, John Broughall, in emails to OALibJ, claimed “ethical concerns” about the hCG-paper urging the publisher to retract it. Raptor says, “Open Access Library Journal . . . is a predatory journal” and the hCG-paper is a “pseudoscientific . . . outright lie” [5].
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With health disparities still pervasive and persistent in the United States, medical researchers and social scientists continue to develop recruitment strategies to increase the inclusion of racial/ethnic minority groups in research and interventions. Effective methods for recruiting samples of African American participants for pediatric research may be best understood when situated within an overarching conceptual model-one that serves to organize and explain effective recruitment strategies. A theoretical framework well suited for this purpose is Bronfenbrenner's ecological systems theory, which views individuals as influencing and being influenced by (both directly and indirectly) a series of interconnected social systems. Based on the ecological systems theory and on previous research from multiple domains (e.g., medicine, psychology, public health, social work), in the current article, we review strategies for effective recruitment of African American children and adolescents for research.
Conference Paper
The millennium has ushered in a new era of oversight for pediatric research, with renewed moral and legal attention to the upper thresholds of potential harms to which children may be exposed in studies. Watershed events discussed include: First, the deaths of two research subjects, allegedly due to insufficient oversight by the investigators and their institutional review boards. Second, the courts expressed concerns about research policies for incompetent persons or children in two cases, T.D. v. N.Y. and Grimes v. Kennedy Krieger Institute, and reinforcement of the principle that the best interest standard must be used for incompetent persons even in research. Third, the Best Pharmaceutical for Children Act and the Pediatric Rule created incentives as well as uncertainty among Institutional Review Boards and researchers about conducting pediatric studies. Fourth, the Office of Human Research Protection signaled the start of more rigorous oversight with its public rebuke and suspension of a National Institute of Child Health and Human Development pediatric obesity study. Failure to clarify the meaning of the pediatric regulations has sometimes misled generally risk-averse institutions and dedicated investigators about what is permissible.
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Background: There is evidence of relationships among serotonin, aggressive behavior, and a childhood history of socially adverse-rearing conditions. This study examines the prolactin response to fenfluramine hydrochloride challenge in young boys who show clinically significant aggressive behavior or who are raised in a social environment that is conducive to the development of chronic aggression.Methods: A series of 34 younger brothers of convicted delinquents underwent standardized psychiatric and observation-based assessments of their social-rearing environments that were conducted during home visits. Approximately 2 years later, these boys underwent a reassessment of psychiatric status and an assessment of central serotonergic activity using the fenfluramine challenge procedure.Results: Increasing degrees of aggressive behavior at either assessment were positively correlated with the prolactin response to fenfluramine challenge. Furthermore, adverse-rearing circumstances that were conducive to the development of aggressive behavior also exhibited positive correlations with the prolactin response. This association between adverse rearing and the prolactin response was statistically independent of that between aggression and the prolactin response.Conclusion: In young boys, aggressive behavior and social circumstances that are conducive to the development of aggressive behavior are positively correlated with a marker of central serotonergic activity.
Article
Spokesperson Vera Sherav said: "They tested these highly experimental drugs. Why didn't they provide the children with the current best treatment? That's the question we have. "Why did they expose them to risk and pain, when they were helpless? "Would they have done those experiments with their own children? I doubt it." Power and authority When I first heard the story of the "guinea pig kids", I instinctively refused to believe that it could be happening in any civilised country, particularly the United States, where the propensity for legal action normally ensures a high level of protection. But that, as I was to discover, was central to the choice of location and subjects, because to be free in New York City, you need money. I've had many ACS case workers tell me: 'We're ACS, we can do whatever we want' David Lansner, family lawyer Over 23,000 of the city's children are either in foster care or independent homes run mostly by religious organisations on behalf of the local authorities and almost 99% are black or hispanic.
Article
Objective: To describe barriers to participation of African Americans in research.Design: Focus group interviews conducted in 1997.Patients: Thirty-three African-American adults presenting to an urban public hospital for outpatient medical care participated in one of five focus groups.Measurements and Main Results: African-American patients' attitudes toward medical research were measured. Mistrust of doctors, scientists, and the government was reported consistently by the participants. Many participants described concerns about the ethical conduct of clinicians and investigators when poor or minority patients are involved and cited examples of exploitation as supporting evidence for their mistrust of the medical establishment. While participants were clear about the violation of human rights in the Tuskegee Syphilis Study, all were misinformed of the historical facts of the study. Few participants understood the concept of informed consent. Participants saw signing the document as relinquishing their autonomy and as a legal protection for physicians. Despite these concerns, participants gave recommendations to improve minority participation in research.Conclusions: African-American participants in this study described distrust of the medical community as a prominent barrier to participation in clinical research. Participants described real and perceived examples of exploitation to support their distrust of researchers. The goal of the consent process, to inform patients of risks and benefits so as to facilitate self-determination, was misinterpreted by these participants. Understanding the importance of interpersonal trust within the clinical relationship may prove to be a significant factor in enhancing participation in clinical trials.