ANALYTIC ESSAYS

The Rationalization of Unethical Research: Revisionist

Accounts of the Tuskegee Syphilis Study and the
New Zealand Unfortunate Experiment
Two studies, widely condemned in the 1970s and
1980sthe Tuskegee study
of men with untreated syphilis and the New Zealand
study of women with untreated carcinoma in situ of the
cervixreceived new defenses in the 21st century.
We noted remarkable similarities in both the studies
and their defenses. Here we
evaluate the scientific, political, and moral claims of the
defenders.
The scientific claims are
largely based on incomplete
or misinterpreted evidence
and exaggeration of the uncertainties of science. The
defenders political arguments mistakenly claim that
identity politics clouded the
original critiques; in fact such
politics opened the eyes of
the public to exploitation. The
moral defenses demonstrate
an overreliance on codes of
conductandhaveimplications
for research ethics today. (Am
J Public Health. 2015;105:
e12e19. doi:10.2105/AJPH.
2015.302720)

Charlotte Paul, MB, PhD, and Barbara Brookes, PhD

IN DARK MEDICINE:
Rationalizing Unethical Medical
Research, William LaFleur describes how rationalizations initially masquerade as reasonsbut
they are insufcient or invalid.1
Even Nazi physicians experimenting in the concentration
camps rationalized their actions.
These acts were grossly immoral,
yet behind them were moral justications. Those involved used
these justications to suppress
and subdue their moral intuitions.2
These were rationalizations offered at the time, but such justications can also be made in the
present for the past actions of
others, though the motives for
doing so are different. We use the
idea of rationalization to explore
recent revisionist accounts of what
have been widely regarded as
unethical medical studies.
The Tuskegee syphilis study in
Macon Country, Alabama, has
been described as an egregious
case of blatant racism.3 Nevertheless, it has always had its defenders, such as those who rushed to
justify it when the study rst came
to public attention in the 1970s.4
In the 21st century, physician
Robert White and cultural anthropologist Richard Shweder
have proffered a fresh defense,
suggesting that the study was neither unethical nor racist.5 Similarly, by the late 1980s a cervical
precancer study in Auckland, New
Zealand, was widely considered
to be emblematic of unethical research and of the failures of professional self-regulation.6 This

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unfortunate experiment7 at the

National Womens Hospital had
many similarities to the Tuskegee
study. Defense of the unfortunate
experiment is not new,8 but the
established accounts of the study,
that women with carcinoma in situ
(CIS) of the cervix9 were followed
but not treated, have recently
been described as misjudged, both
factually and ethically.10
The status afforded these new
accounts is important. The Tuskegee and New Zealand studies have
provided models of unethical
practice for a generation of physicians and researchers. The US
Belmont Report was prompted by
the Tuskegee study revelations.11
The New Zealand cervical cancer
study was subject to a judicial inquiry and report (the Cartwright
Inquiry),12 and the subsequent
recommendations led to wideranging changes in that country,
including a legally enforceable
code of patients rights and the
appointment of a health and disability commissioner with powers
to investigate complaints of breaches
of the code.13
It would be wrong to exaggerate
the importance of the new defenses. Though a Lancet Infectious
Diseases editorial in 2005 used
Whites and Shweders revisionist
accounts to question whether the
Tuskegee study was unethical or
racist,14 these interpretations have
not been widely cited. Similarly,
though the New Zealand Medical
Journal carried an invited editorial
by the defender of the cervical
cancer study, historian Linda

Bryder,15 and the Royal Society of

London published an admiring
review of Bryders book,16 elsewhere her work has been strongly
criticized.17 The latest revelation
about the involvement of Tuskegee investigator John Cutler in
deliberately infecting people with
gonorrhea and syphilis in Guatemala in the 1940s should have put
an end to defenses of the ethics of
those investigators.18 Nevertheless, as historian Susan Reverby
points out about the Tuskegee
study, There is a truth to what
actually happened, and trying to
understand it does matter. She
says that the revisionists arguments should be considered, if for
no other reason than to understand why they are being made.19
Here we provide an overview,
informed by the reports of the
ofcial inquiries, of the 2 studies
similarities and differences.20 We
draw on evidence from the original inquiries, historical accounts,
and reports by the study investigators themselves to evaluate
the scientic claims made by the
defenders and explain their errors
in reasoning. We also explore
the political context in which the
studies came to attention and
the defenders moral claims.
Although the studies began in
different historical periods (1932
in Alabama, 1966 in New Zealand), they came to light at a similar time (1970s and 1980s), and
the revisionist accounts were
written at a similar period (the rst
decade of the 21st century). Examining the accounts together

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ANALYTIC ESSAYS

casts a light on the way rationalization of unethical practices in

the past takes a particular form in
our own day.

OVERVIEW OF STUDIES
In 1932 in Macon County,
Alabama, the US Public Health
Service (USPHS) started a study of
400 African American men with
latent or late syphilis who had not
been treated. Men without syphilis
(about 200) were also enrolled as
control participants. The study
was originally designed to last for
6 to 8 months, but it turned into
a long-term study that continued
for 40 years. The arsenic and
bismuth compounds (metal therapy) used for treatment at the time
were not offered to the men. The
aims of the study were never
clearly stated, but they certainly
included documenting the natural
course of untreated syphilis in
African American men and examining whether the disease had
a different course according to
race. When penicillin became
available in the 1940s and 1950s,
this was also withheld.
In 1966, gynecologist Herbert
Green, at National Womens Hospital in Auckland obtained approval from the Hospital Medical
Committee to withhold the conventional treatment used at the
hospital (cone biopsy) from women
with CIS of the cervix. His recorded
aim was to attempt to prove that
CIS is not a pre-malignant disease.21 This entailed following
without treatment a selected group
of women with a new diagnosis
(obtained by a small punch biopsy) of CIS. The condition of the
women with subsequent positive
smears (indicating persistent disease) was monitored with repeated
smears and biopsies to check for
invasive cancer. Green wrote that
he was attempting to follow

indenitely patients with diagnosed

but untreated lesions.22 He withheld treatment, for varying lengths
of time, from more than 100
women with CIS and microinvasive cancer of the cervix, vagina,
and vulva.23
The similarities between these
studies, which took place at different times and in different places, are striking. Both followed
and recorded the natural course of
untreated disease. They did not
seek informed consent for this
departure from normal care. Both
continued for many years (1932--1972 in Alabama and 1966--1987 in New Zealand). The
adverse outcomes for many of the
participants were detailed in published reports before the studies
were stopped. The investigators
attempted to deny some participants treatment elsewhere.24
Many also received some treatment in the course of the studies.
The studies were poorly run. Internal complaints (by Peter Buxton
at the USPHS and physicians Bill
McIndoe and Jock Mclean at National Womens Hospital) led to
internal inquiries that recommended continuation.25 Both
studies ended only after journalists brought them to public notice.26 Finally, in neither case were
criminal charges led, but in both
some compensation was eventually provided.27
The studies also had several
relevant differences. No ethical review preceded the Tuskegee study,
whereas the Hospital Medical
Committee performed that function for Greens study. The natural
course of syphilis was followed
until death (it seems fairly clear that
men who developed symptoms of
late syphilis remained untreated).
By contrast, when women with CIS
developed clinically invasive cancer (though not microinvasive cancer), they were offered treatment.

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The Tuskegee study clearly deceived participants: they were told

they were receiving treatment
when they were not. In the cervical
cancer study, Green reassured
women they did not need treatment to remove the lesion.28 Green
misled his patients because he did
not tell them that his view went
against prevailing opinion, but arguably he did not deliberately deceive them because he believed
what he told them. We have no
evidence that the published results
of the Tuskegee study were deliberately misrepresented, unlike in
New Zealand, where Green misreported emerging results to look
more favorable to his hypothesis.29
Few expressions of concern arose
within the USPHS, whereas physicians at National Womens Hospital made repeated complaints
about Greens study.
Research participants in both
studies were relatively powerless:
poor rural African Americans and
urban public hospital patients
in New Zealands largest city,
including European, Maori, and
Pacic Islands women, at a time
when women were expected to be
passive recipients of reproductive
health care. But the men of Macon
County, at a time of severe poverty, racial segregation, and almost
no access to health services, were
much more disadvantaged.30
Finally, the ofcial inquiries into
the 2 studies were very different.
For the inquiry into the Tuskegee
study, the US Department of
Health, Education, and Welfare
empaneled citizens representing
medicine, law, religion, labor, education, health administration, and
public affairs. The investigation
was conducted less formally than
the Cartwright Inquiry: some panel
members went to Macon County
to interview some of the men,
and public hearings were held in
Washington, DC. Set up in August

1972, it reported in April 1973. A

minority report by Jay Katz contained stronger criticisms of the
study. Subsequently, the Tuskegee
panel was criticized for not adequately addressing some important facts, particularly the extent
of deception, because panel
members had no access to the
early documents.31
By contrast, a district court
judge, assisted by legal and medical advisers, conducted the Cartwright Inquiry. Six months of
public hearings obtained evidence
from numerous international and
national experts. The inquiry
subpoenaed relevant documents,
examined all patients medical records, and interviewed 81 patients
or relatives. Almost all parties
had legal representation. Set up
in June 1987, the inquiry reported
in July 1988.
Just as the studies themselves
had similarities and differences, so
do the nature of the defenses.
Shweder largely connes himself
to questioning the received account of the Tuskegee study (and
pointing out the myths) and is
receptive to debate. White puts
forward alternative evidence on
empirical matters but accepts
some of the received account, including the charge that the men
were deceived. Bryder goes further in her discussions of the
cervical cancer study, arguing
against almost every aspect of the
received account.

SCIENTIFIC CLAIMS
The status of these claims has
been addressed in detail elsewhere,32 so we summarize the
claims and rebuttal for both studies here. First, the defenders assert
that treatment at the time the
studies started (and throughout
their course) was of uncertain
value and hazardous.33 In fact, the

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evidence available in 1932 indicated that treatment of latent

syphilis with arsenic and bismuth
compounds substantially reduced
the risk of tertiary syphilis. The
relevant USPHS cooperative clinical studies reports on treatment of
latent syphilis were published in
1932 and 1933,34 and the Department of Health, Education,
and Welfare panel relied on them.
Progression to symptomatic, tertiary syphilis occurred in 2% to
5% of the treated group and 20%
to 30% of the untreated group.
Treatment with arsenic and bismuth carried signicant risk, but
was considered less harmful than
not treating.35 In 1947 the Syphilis Study Group of the USPHS
regarded treatment with arsenic
and bismuth compounds as having
proven value,36 though by then
the Venereal Disease Division
recommended penicillin because
it offered the advantages of brevity and safety, and indirect evidence suggested that it would be
effective against latent disease.37
Nevertheless, the supply of penicillin was still limited. By the mid1950s, the USPHS recommended
that penicillin should be used for
all stages of syphilis.38 It is not
plausible to propose that the study
investigators, who worked for the
USPHS, would have had clinical
grounds for withholding penicillin
from the Tuskegee men once it
became available.
In the 1960s, the effectiveness
of cervical screening in reducing
the incidence of cervical cancer in
a population was still a matter of
dispute, 39 but the effectiveness
of treatment of CIS was not. In
studies among women whose
CIS remained untreated, 24% to
75% progressed to invasive
cancer over up to 17 years,40
but treatment reduced the risk
of developing invasive cancer to
1% to 2%. 41

The defenders claims that both

studies began in a climate of substantial scientic uncertainty
about the balance of benet versus harm are based on omission or
misreading of the relevant evidence. In modern parlance, the
alternatives were not in equipoise:
the balance of benets and harms
favored treating according to the
scientic standards of the time.
The second defense claim is
that other, contemporaneous
studies withheld treatment; hence
these cases should not be singled
out for criticism. A study of untreated latent syphilis, similar to
the Tuskegee study, was published
in 1948, and although White describes treatment as being willfully and intentionally denied,42
the studys investigators described
their actions as to permit patients
older than 50 years to remain
untreated.43 The investigators
conjectured that the harms of
treatment might be greater than
the benets at that age, but the
results led them to conclude that
at least up to age 60 years, if
patients were in good health,
treatment should be offered. This
study had less potential for bias
than the earlier studies but
showed similar effectiveness of
treatment.44
Likewise, Bryder claimed that
the international medical press
reported on many studies in which
doctors followed up cases of CIS
without treatment, that there
were many follow-up studies of
women diagnosed with CIN1,
CIN2, CIN3 (CIS), and that there
was no shortage of studies but no
denitive answers.45 Yet none of
the contemporary studies cited by
Bryder was similar to Greens
study, except for a study of women
with abnormal smears who were
aged 20 or younger, an age group
for which cervical screening was
not recommended and where

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genuine uncertainty existed. 46

Bryder conated studies of
follow-up of women after treatment with those of follow-up
without treatment, and apparently
comparable studies of withholding
treatment enrolled women with
lesser degrees of abnormality, in
particular cervical dysplasia, in
which the endpoint was CIS and
the women gave informed consent.47 Therefore, claims that the
studies were not unusual at the
time demonstrate a lack of care
in making comparisons.
The third claim the defenders
make is that morbidity and mortality were not worse because of
participation in the studies.
Shweder asserts that no treatment
would have been available to
these men if they had not been
part of the study, so they were
not harmed by participation.48
Whether morbidity and mortality
were worse for the men in the
Tuskegee study does depend on
whether they would have received
treatment outside the study. Nevertheless, the conclusion of the
investigators themselves was that
the men were harmed. Published
comparisons in the early years
of the untreated Tuskegee men
with treated men led the authors
to conclude that
adequate antisyphilitic treatment
prevented all forms of clinical
relapse during the rst 15 years
of infection, whereas only one
fourth of the Negros with untreated syphilis were normal.49

This demonstrates that the investigators believed that treatment

was effective, and extrapolating
from later studies, it is certain that
lack of treatment among the Tuskegee men was seriously harmful.
Bryders case for the cervical
cancer study is built around
Greens defense at the inquiry that
his conservative management
had been a fortunate programme

because unnecessary surgery (removal of the lesion) was avoided.50

Bryder agrees that a later analysis
showed harm in this approach, but
asserts that this knowledge was
not available at the time.51 In fact,
ample evidence existed that women
in Greens study did worse than
those who received standard treatment (cone biopsy) at the same
hospital, starting with Greens own
publication in 1974.52 Moreover,
far from beneting from being
spared treatment, many of the
women in Greens care were required to undergo multiple biopsies
(each under general anesthetic) to
check for invasion,53 more than
30 developed cancer, and at least
8 died.54 In both studies the relevant material is ignored or misinterpreted by the defenders.

POLITICAL CLIMATE
The revisionist accounts can be
seen as part of a reassessment of,
or backlash against, the change in
intellectual climate between the
1960s and the 1990s, encompassing feminism and Black studies.55 A common idea in these
movements is that subtle oppression and exploitation is ubiquitous,
and in this period activists identied abuses in many areas of
modern society that had traditionally been perceived as benign.
The backlash emphasizes the excesses of these movements or
misreads what is at stake. Surveying the scene in the United States,
Daniel Rodgers observes that
some of those reacting against
these new movements saw in them
nothing short of a collapse of truth.
Abandon the ground of moral
reasoning, the argument goes, and
all that was left was the play of
power and identity politics.56
In line with such critiques, the
defenders of the original studies
contend that the politics of

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ANALYTIC ESSAYS

oppression originally led African

Americans and feminists to misread the scientic evidence to
advance political ends. They claim
that political activists sought to
rescue the untold stories of poor
African American men and of
unsuspecting women.
To White, Shweder, and
Bryder, these stories are suspect:
they ow from rhetoric not
reason,57 or emotion instead of
reason. Bryder argues that the
Cartwright Inquiry was driven
by a feminist agenda because
Cartwright said she conducted the
inquiry as a feminist and as a
lawyer.58 Bryder, in an interview,
said that Judge Cartwright misunderstood the evidence, was confused, and got it wrong: She was
interviewing women who had
cancernow its a horrible disease
and she is a very sympathetic
listener and I think she was taken
by that.59 Of the defenders
themselves, White is African
American and Bryder is a woman;
perhaps such defenses are more
convincing coming from members
of the affected groups.
It was indeed the case that, at
times, identity politics got out of
hand in the responses to publicity
about both studies. The wrongs
revealed were sometimes exaggerated to create new myths.
Thus, a survey in 1999 found that
80% of African Americans believed that the Tuskegee men had
been injected with syphilis.60
Furthermore, because of the
complexity of both syphilis and
cervical cancer, it is unsurprising
that many people wrongly assumed, after the studies were
exposed, that all latent syphilis
would progress to death without
treatment or that all untreated
CIS would progress to invasive
cervical cancer, when in fact over
20 years only about 30% to 50%
of people with either disease

would have had their condition

progress.61
In the New Zealand case it did
not help that the Cartwright
Inquirys long title referred to allegations concerning the treatment
of cervical cancer62; in fact it was
the precursor of this condition that
Green failed to treat. This may
have led Iain Chalmers, a prominent epidemiologist, to his initial
belief that all the women in
Greens study had cervical cancer
(not CIS) at the outset. When
Chalmers discovered this was not
so, he wanted to clear a totally
unjustied slur that arose when
Greens study was
referred to in the same breath as
the scandalous long-term study of
untreated syphilis in poor black
sharecroppers in Tuskegee,
Alabama.63

Chalmers may have assumed

a qualitative difference between
the studies: in one, disease was left
untreated and in the other, a precursor, but not the disease of interest itself, was left untreated.
The closing submission to the
Cartwright Inquiry by the Ministry
of Womens Affairs expanded
Greens wrongs to the whole of the
medical profession:
Ultimately the issues are who
controls medicine and how,
about who benets from it and
who are its victims. Thus as so
many witnesses have clearly
stated, the central issue, above all
others, is power.64

Statements such as this caused

some people to think that the inquiry was simply a vehicle to wrest
power away from the medical
profession. An early defender of
Green responded to criticism of
her own claims in a piece entitled
Have You Been Burned at the
Stake Yet?65
The rhetoric of those who made
exaggerated claims about the
wrongs of the Tuskegee and

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New Zealand studies may have

encouraged recent commentators
to see African American and feminist health activists as wrong on all
counts. These defenders therefore
suspect that the studies themselves
received unfair press coverage at
the hands of polemicists, who were
not to be trusted. In an effort to
rescue the physicians found to be at
fault in both studies, the defenders
highlight evidence that might exculpate them and explain their
actions. For White, this involves
emphasizing the role of African
American health workers; Bryder
highlights the agency of Greens
patients (meanwhile ignoring the
fact that although they had been
referred to his care for the best
available treatment, they were unknowingly denied it). Yet neither of
these positions materially supports
Whites and Bryders claims that
the original critiques of the studies
were clouded by politics and that
once the clouds were cleared little
of substance remained.
Defending the studies may also
speak to a desire to create a more
comfortable medical and national
narrative in which progress and
the uncertainties of science are the
touchstones and medicine evolves
in step with society. As Reverby
writes, how easily medical uncertainty masks ethical blindness.66 In both Shweders and
Bryders accounts, claimed uncertainty is used to exculpate the
key actors.

MORAL ARGUMENTS
The defenders key moral
claims are that the studies, at the
time, did not violate medical research
codes; that they were medically
acceptable; and that, for Tuskegee,
participants were not harmed because treatment was unavailable
outside the study for such men.

By contrast, the ofcial inquiries

concluded that the studies were
ethically wrong in proceeding
without informed consent and in
inicting harms that could have
been anticipated, for no commensurate benet. Katz argued in his
minority report in 1973 that the
most fundamental reason for
condemning the Tuskegee study
at its inception was not that all
participants should have been
treatedsome might not have
wished to be treated
but rather that they were never
fairly consulted about the research project, its consequences
for them, and the alternatives
available to them.67

Similarly, Cartwright concluded

that
had patients been . . . informed of
the types of treatment available
to them, informed of the risks of
procedures which were not conventional, denitive treatment for
carcinoma in situ, and given the
opportunity freely to decide
whether or not to be part of the
trial, then the trial could not be so
severely criticised.68

The defenders argue that standards of consent were not violated

because in 1932 the concept of
informed consent had not even
been imagined by medical professionals,69 no written standards
for experimentation existed in the
1930s,70 and the existing Helsinki
Declaration gave a strong exemption for patient consent in
therapeutic research.71 Furthermore, they argue that the behavior
of the researchers was widely acceptable at the time. Shweder
points out that doctors in the
1930s did not disclose information because of a benign paternalism that kept their eyes xed on
some imagined greater good.72
Bryder argues that Greens relationship with his patients was little
different from that of other

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medical professionals of his era.

She writes,
Like others, Green stressed a
condent approach: . . . if the
physician does not worry too
much about the disease then
neither will the patient!73

The defenders are wrong in

their interpretation of the ethical
codes, wrong in not knowing
about codes and principles of
conduct in existence before these
studies were instigated, and wrong
that this behavior was widely acceptable at the time. In the United
States, attempts to regulate medical research and to develop codes
of practice began years before
the Tuskegee study started.74 In
1907, a group that included the
philosopher William James urged
the passage of a bill to ensure that
no experiment should be performed in any other human being
without his intelligent written consent.75 In 1928, Harvard professor of medicine Richard C. Cabot
argued that
experimentation upon a human
being without his consent and
without the expectation of benet
to him is without any ethical
justication.76

Ethical guidelines for human

experimentation, requiring consent, were issued by the government in Germany in 1931.77 The
Declaration of Helsinki was promulgated before Greens study, but
Bryder misreads the declaration in
claiming that it gives strong exemption for patient consent.78
Even if the defenders were right
that the actions of the Tuskegee
and New Zealand researchers
were not forbidden by codes of
research ethics, and were broadly
accepted at the time, the question
would become whether and how
one should make moral judgments
in the absence of agreed sanctions.
The defenders claim that research ethics cannot be judged

except according to written codes

of conduct. This cannot be the
case. Historically, codes of conduct
worked to codify existing practices
or existing aspirations. The Helsinki
Declaration explicitly mentions
older professional obligations:
The health of my patients shall be
my rst consideration.79 From
Hippocrates to Claude Bernard in
the 19th century to our own day,
tradition gives primacy to a morality for medicine as the science
and art of healing. For centuries,
medicine has been understood by
practitioners and lay people to
involve not only knowledge and
skills, but also the application of
these in the service of important
moral ends. Drawing on this long
tradition, Edmund Pellegrino describes the medical profession as a
moral community by virtue of
several characteristics:
The inequality of the medical
relationship, the nature of medical decisions, the nature of
medical knowledge and the
ineradicable moral complicity
of the physician in whatever
happens to his patient.80

Contemporary physicians made

moral critiques of both studies
during their progress. Two physicians wrote to investigators in
the Tuskegee study after reading
published reports of the study. In
1955 Count D. Gibson wrote,
It seems to me that the continued
observation of an ignorant individual suffering with a chronic
disease for which therapeutic
measures are available, cannot be
justied on the basis of any accepted moral standard.81

He mentioned Hippocrates,
Maimonides, and the American
Medical Association Code of
Ethics. In 1964 Irwin Schatz
wrote, I am utterly astounded by
the fact that physicians allow patients with potentially fatal disease to remain untreated when
effective therapy is available.82

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He called on the physicians associated with the study to reevaluate their moral judgments.
Similarly, in 1973 Greens colleagues McIndoe and McLean wrote
to the superintendent of National
Womens Hospital outlining their
concerns about the harms to patients of Greens management.83
These complaints led to an internal inquiry, and the subsequent
publication of the results of
Greens study by McIndoe and
McLean, together with Ron Jones
and Peter Mullins,84 eventually
brought the study to public notice.
A related claim is that these
studies might be unethical by todays standards, but they need to
be understood in the sociocultural
context and medical culture of
their time. Certainly good historical inquiries can shed light on the
social and medical environments
that contributed to the formulation and continuation of these
projects. In each of our examples, historical inquiry has demonstrated the ways the existing
power structures made it very
difcult to criticize the studies or
to allow the criticism to lead to
change.85 In the case of the poor
African American sharecroppers
in the American South, even
African American doctors and
nurses did not raise criticisms. At
National Womens Hospital, with
female patients and male doctors,
there is no record of a patient or
a nurse complaining about Green.
Formal complaints came only from
physiciansand only from those
outside the academic hierarchy.
Shweder also argues that the
men with syphilis in the Tuskegee
study were not worse off than
their counterparts outside the
study in the same situation in
Macon County, because treatment
was inaccessible to such people
at that time.86 David Rothman
pointed out the dangers in

experiments that build on social

deprivation, including the fact that
they are likely to manipulate the
consent of participants.87 And indeed this happened. Because the
men were deceived into believing
they were receiving treatment,
they had no chance even to try to
obtain medical care. There might
have been justication for a shortterm trial (with consent), investigating the conjectured harms of
lack of treatment in African
American men with latent and late
syphilis and thus providing evidence on which to base treatment
of all such men. But this was not
the Tuskegee situation, and for the
study to continue into the 1940s
let alone laterwhen outside the
study people with syphilis in Macon
County were being routinely offered
treatment shows that Shweders
justication cannot hold up.
By the 1970s and 1980s, the
people outside the medical profession who brought the studies to
public notice did not hesitate to
judge them to be wrong. The
moral resources they used to discern this were not new and not
relative. It was obvious that the
participants were treated as means
to scientic ends by the investigators; that they were not told the
truth, and even repeatedly lied to;
and that they were subjected to
avoidable harm. Perhaps it is
a cramped morality, consisting
only of formal obligations or rules
and cut off from its source in
moral intuitions, that blinds the
defenders.88 In his reections on
experimenting on people, philosopher Hans Jonas cited the Golden
Rule in its negative form: do not
do unto others what you do not
want done unto yourself.89 The
exercise of the moral imagination
should enable one to put oneself
in the place of the participant in
research. For the men in the
USPHS, it was 1 step too far to

American Journal of Public Health | October 2015, Vol 105, No. 10

ANALYTIC ESSAYS

imagine that the poor men of

Macon County were just like
them. Likewise, Green could not
imagine that a woman might
wish to make up her own mind
about treatment options rather
than trust to his (impaired) judgment. When Tuskegee investigator Sidney Olansky was asked
about withholding penicillin, the
interviewer asked, Wouldnt
you have treated yourselves?
Yet Olansky replied, I dont
know . . . It is a trick question.90
The 2 studies came to public
notice in the ferment of the civil
rights movement and the womens
movement. Indeed, the explosion
of moral insight and the determination that characterized these
movements provided a climate in
which the existing power structures could be deed and the unethical practices exposed to public
view. Of course the effect of this
exposure was not simply a benet
for medicine and research. The
legacies of both Tuskegee and the
New Zealand study have suffered
abuses.91 Yet it is perhaps a sign
of the different times that we live
in now, when those social movements are no longer so strong, that
the defenders arguments seem
more acceptable.
A distinguished African American physician, Charles MacDonald, writing in 1974 in the Journal
of the National Medical Association, picked up the sense of having
ones eyes opened:
In my opinion the greatest contribution of the Tuskegee Study
lies not in the scientic merit of
the publications that have emanated from it, but in the anguish
and concern its revelation has
provoked in the minds of lay
persons, physicians, medical
investigators and others . . .
our entire nation has been stimulated to rethink and redene
our present day position and
practices as they relate to human
experimentation.92

CONCLUSIONS
Even though we can appreciate
the context in which these arguments in defense of the studies
have emerged, they are mistaken
in all substantive disagreements
with the original critiques. In their
attempt to explain and justify past
medical research, the defenders
have used existing power relations, overreliance on and limited
interpretation of codes of conduct,
confusion about scientic issues,
and exaggeration of the uncertainties of science to make their
case. In the end their accounts
rely on an impoverished view of
ethics: they have become whitewashes for studies that caused
real harms.
Both studies came to light
when existing power structures
were under intense scrutiny from
feminism and opposition to racism. Yet when the clouds of
identity politics are cleared, we
can see that they did not affect
the substance of the original critiques. Moreover, the political
focus on rescuing untold stories
of African Americans and women
enabled the wider public to see
the racism and exploitation with
fresh eyes.
Finally, the rationalizations tell
us something important about
research ethics today. Both the
Tuskegee study and the unfortunate experiment deserve repeated
revisiting because of the serious
moral issues at stake. Yet retellings
that rely too heavily on the existence and the authority of codes of
ethics serve to reinforce a view
that such codes are all that is
necessary to protect vulnerable
research participants. Their existence has not prevented institutional review board approval of
studies today that are potentially
exploitative.93 More than rules are
required; as moral philosopher

October 2015, Vol 105, No. 10 | American Journal of Public Health

Jonathan Glover writes, a code of

ethics should include the imagination to look through the rules to
the human reality.94 Codes and
guidelines are necessary, but they
require thoughtful moral interpretation, alert to context.95 Those
who rationalize mistakes made in
the past impair our ability to make
just decisions today. j

About the Authors

Charlotte Paul is emeritus professor in the
Department of Preventive and Social
Medicine and Barbara Brookes is with the
Department of History and Art History,
University of Otago, Dunedin, New Zealand.
Correspondence should be sent to Dr.
Charlotte Paul, Dept of Preventive and Social
Medicine, University of Otago, Frederick St,
Dunedin, New Zealand, +6427 6659099
(e-mail: charlotte.paul@otago.ac.nz).
Reprints can be ordered at http://www.ajph.
org by clicking the Reprints link.
This article was accepted April 13, 2015.

Contributors
C. Paul conceptualized the idea, in
discussion with B. Brookes; reviewed the
literature; and wrote the rst draft of the
article. B. Brookes revised the article for
important intellectual content.

Acknowledgments
We thank Jing-Bao Nie for very helpful
discussion of the ethical issues and Joanna
Manning, Tom Cunningham, and Ron
Paterson for helpful comments on a previous draft.
Note. C. Paul was 1 of 3 medical
advisers to the Cartwright Inquiry.
She assisted in compiling the medical review for the Inquiry.

Human Participant Protection

Institutional review board approval was
not needed because no human participants were involved.

Endnotes
1. W. R. LaFleur, Introduction: The
Knowledge Tree and Its Double Fruit, in
Dark Medicine: Rationalizing Unethical
Medical Research, ed. W. R. LaFleur,
G. Bohme, and S. Shimazono (Bloomington,
IN: Indiana University Press, 2007),
1---12.
2. G. Bohme, Rationalizing Unethical
Research: Taking Seriously the Case of
Viktor Von Weizsacker, in Dark Medicine,
15---29.
3.

LaFleur, Introduction.

4. J. H. Jones, Bad Blood: The Tuskegee

Syphilis Experiment (New York, NY: Free
Press, 1981), 1---15.
5. R. M. White, Unraveling the Tuskegee Study of Untreated Syphilis, Archives
of Internal Medicine 160, no. 5(2000):
585---598; R. M. White, Misrepresentations of the Tuskegee Study of Untreated
Syphilis, Journal of the National Medical
Association 97, no. 12 (2005): 1729--1731; R. A. Shweder, Tuskegee Reexamined: A Cultural Anthropologist
Offers a Counter-narrative to the Infamous Story of US Government Scientists
Allowing Black Men to Suffer from Untreated Syphilis, Spiked January 8,
2004, http://www.spiked-online.com/
Articles/0000000CA34A.htm
(accessed April 17, 2012).
6. A. V. Campbell, A Report from
New Zealand: An Unfortunate Experiment, Bioethics 3, no. 1 (1989): 59--66.
7. S. Coney. The Unfortunate Experiment: The Full Story Behind the Inquiry Into
Cervical Cancer Treatment (Auckland,
New Zealand: Penguin Books NZ Ltd,
1988).
8. J. Corbett, Second Thoughts on the
Unfortunate Experiment at National
Womens, Metro Magazine, July 1990,
54---73.
9. Now, with severe dysplasia, dened
as cervical intraepithelial neoplasia 3
(CIN3).
10. L. Bryder, A History of the Unfortunate Experiment at National Womens
Hospital (Auckland, New Zealand: Auckland University Press, 2009); L. Bryder,
Womens Bodies and Medical Science
(Basingstoke, UK: Palgrave McMillan,
2010); L. Bryder, The Rise and Fall of
National Womens Hospital, a History
(Auckland, New Zealand: Auckland University Press, 2014).
11. National Commission for the Protection of Human Subjects of Biomedical
and Behavioral Research, The Belmont
Report: Ethical Principles and Guidelines
for the Protection of Human Subjects of
Research (Washington, DC: US Dept
of Health, Education, and Welfare,
1979).
12. S. R. Cartwright, The Report of the
Cervical Cancer Inquiry: The Report of the
Committee of Inquiry into Allegations
Concerning the Treatment of Cervical
Cancer at National Womens Hospital and
Into Other Related Matters (Wellington,
New Zealand: Government Printer,
1988). (Also known as the Cartwright
Inquiry.)
13. J. B. Nie and L. Anderson, Bioethics
in New Zealand: A Historical and Sociological Review, in Annals of Bioethics, ed.
J. F. Peppin and M. J. Cherry (Lisse, the

Paul and Brookes | Peer Reviewed | Unethical Research | e17

ANALYTIC ESSAYS

Netherlands: Swetz and Zeitlinger, 2003),

341---361.
14. Clearing the Myths of Time: Tuskegee Revisited, Lancet Infectious Diseases
5, no. 3 (2005), 127.
15. L. Bryder, A Response to Criticisms
of the History of the Unfortunate Experiment at National Womens Hospital,
New Zealand Medical Journal 123, no.
1319 (2010): 14---21.
16. R. W. Carrell, Trial by Media,
Notes and Records of the Royal Society of
London 66, no. 3 (2012): 301---306.
17. C. Barton, An Unfortunate Fallout:
Academics Against Bryders Revisionist
History, New Zealand Herald, September
19, 2009, B2; B. Brookes, The Making
of a Controversy: History, Medicine and
Politics, in The Cartwright Papers: Essays
on the Cervical Cancer Inquiry 1987---88,
ed. J. Manning (Wellington, New Zealand:
Bridget Williams Books, 2009), 100--117; S. Coney, The Unfortunate History, in Cartwright Papers, 139-148;
C. Barton, No Accounting for Mistakes,
New Zealand Herald, July 17, 2010, B6.
For complaints to the publisher, see Facts
About the Cartwright Inquiry: The
University of Auckland, http://www.
cartwrightinquiry.com/?page_id=31
(accessed April 7, 2014).
18. US Dept of Health and Human
Services, Fact Sheet on the 1946---1948
US Public Health Service Sexually Transmitted Diseases Inoculation Study,
available at: http://www.hhs.gov/
1946inoculationstudy/factsheet.html
(accessed March 6, 2015).
19. S. M. Reverby, Examining Tuskegee:
The Infamous Syphilis Study and Its Legacy
(Chapel Hill: University of North Carolina
Press; 2009), 233.
20. US Dept of Health, Education, and
Welfare, Final Report of the Tuskegee
Syphilis Study Ad Hoc Advisory Panel
(Washington, DC: US Government Printing Ofce, 1973); Tuskegee Syphilis
Study Legacy Committee, Legacy Committee Request, in Tuskegee Truths: Rethinking the Tuskegee Syphilis Study, ed.
S. M. Reverby (Chapel Hill, NC: University
of North Carolina Press, 2000), 559--566; President William C. Clintons Remarks, in Tuskegee Truths, 574---577;
Cartwright, Report of the Cervical Cancer
Inquiry.
21. Cartwright, Report of the Cervical
Cancer Inquiry, 21.
22. G. H. Green, Cervical Carcinoma In
Situ, Australian and New Zealand Journal
of Obstetrics and Gynaecology 10, no.1
(1970), 41.
23. G. H. Green, The Progression of
Pre-Invasive Lesions of the Cervix to Invasion, New Zealand Medical Journal 80,
no. 525 (1974): 279---827; R. W. Jones
and M. R. McLean, Carcinoma In Situ of

the Vulva: A Review of 31 Treated and

Five Untreated Cases, Obstetrics and
Gynaecology 68 (1986): 499---503; Cartwright, Report of the Cervical Cancer
Inquiry, 114.

36. L. A. Altshuler et al., The Status of

Penicillin in the Treatment of Syphilis,
December 1, 1947, Journal of the American Medical Association 136, no. 13
(1948): 873---879.

24. US Dept of Health, Education, and

Welfare, Final Report of the Tuskegee
Syphilis Study, 9-10; Cartwright, Report of
the Cervical Cancer Inquiry, 50.

37. Venereal Disease Education Institute, Diagnosis and Treatment of Syphilis:

A Handbook for Physicians (Raleigh, NC:
Venereal Disease Division, US Public
Health Service, 1948).

25. US Dept of Health, Education, and

Welfare, Final Report of the Tuskegee
Syphilis Study, 10---11; Cartwright, Report
of the Cervical Cancer Inquiry, 70---88.
26. J. Heller, Syphilis Victims in U.S.
Study Went Untreated for 40 Years, in
Tuskegee Truths, 116---118; P. Bunkle and
S. Coney, An Unfortunate Experiment
at National Womens Hospital, Metro
Magazine, June, 1987, 46---65.
27. F. Gray, The Lawsuit, in Tuskegee
Truths, 473---488. In New Zealand the
Accident Compensation Commission paid
compensation.
28. Green wrote, close follow-up is not
mentally traumatic to patients treated
conservatively even to those with persistently positive smearsproviding one can
speak to the patient with condence.
(Green, Cervical Carcinoma In Situ, 43.)
29. Cartwright, Report of the Cervical
Cancer Inquiry, 54---55.
30. Jones, Bad Blood, 61---77.
31. Reverby, Examining Tuskegee, 91--100.
32. C. Paul, Defenses of the Tuskegee
Syphilis Study: Assessment of Empirical
Claims. Working Paper, July 17, 2015,
http://www.otago.ac.nz/dsm/people/
expertise/prole/?id=633 (accessed
July21, 2015); C. Paul, The Medical
Context, in Cartwright Papers, 118---38.
33. R. M. White, The Tuskegee Study of
Untreated Syphilis Revisited, Lancet Infectious Diseases 6, no. 2 (2006): 62---63;
Clearing the Myths of Time: Tuskegee
Revisited, Lancet Infectious Diseases 5,
no. 3 (2005), 127; White, Misrepresentations of the Tuskegee Study; Bryder,
History of the Unfortunate Experiment,
40.
34. J. E. Moore et al., Latent Syphillis:
Cooperative Clinical Studies in the Treatment of Syphilis, Venereal Disease Information 13 (1932): 351---364; J. E.
Moore et al., Latent Syphilis: Cooperative
Clinical Studies in the Treatment of
Syphilis, Venereal Disease Information
14(1933):1---56.
35. J. E. Moore, The Modern Treatment of
Syphilis [textbook, 1933], cited in Racism and Research: The Case of the Tuskegee Syphilis Study, Hastings Center
Report 8 (1978): 21---29. For more detail,
see Paul, Defenses of the Tuskegee
Syphilis Study: Assessment of Empirical
Claims.

e18 | Unethical Research | Peer Reviewed | Paul and Brookes

38. VD Fact Sheet. No. 10 (Washington,

DC: US Public Health Service, 1953), 20;
VD Fact Sheet. (Washington, DC: US
Public Health Service, 1960), 19.
39. E. G. Knox, Cervical Cytology: A
Scrutiny of the Evidence, in Problems
and Progress in Medical Care: Essays on
Current Research, Second Series, ed. G.
McLachlan (London, UK: Oxford University Press, 1966), 279---309.
40. A. I. Spriggs, Precancerous States of
the Cervix Uteri, in Precancerous States,
ed. R. L. Carter (London, UK: Oxford
University Press, 1984), 317---355.
41. P. Kolstad and V. Klem, Long-Term
Followup of 1121 Cases of Carcinoma In
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125---129; F. E. Bryans et al., The Cytology Program in British Columbia Part II.
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42. White, Unraveling the Tuskegee
Study, 595.
43. H. L. Blum and C. W. Barnett,
Prognosis in Late Syphilis, Archives of
Internal Medicine (Chicago) 82, no. 4
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44. Paul, Defences of the Tuskegee
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45. Bryder, History of the Unfortunate
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46. J. E. MacGregor and S. Teper, Uterine
Cervical Cytology and Young Women,
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386---393.
48. Shweder, Tuskegee Re-Examined.
49. R. A. Vonderlehr et al., Untreated
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50. Bryder, History of the Unfortunate
Experiment, 197. Confusingly, Green
used conservatively treated to describe
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and J. W. Donovan, The Natural History
of Cervical Carcinoma In Situ, Journal of
Obstetrics and Gynaecology of the British
Commonwealth 77, no. 1 (1970): 1---9.

Normally the term is used to denote

treatment that removes the lesion but
conserves the uterus, e.g., cone biopsy and
local methods to remove the lesion.
51. Bryder, History of the Unfortunate
Experiment, 43.
52. G. H. Green, The Progression of
Pre-invasive Lesions of the Cervix to Invasion, New Zealand Medical Journal 80,
no. 525 (1974): 279---287; W. A. McIndoe
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In Situ of the Cervix, Obstetrics and
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Cartwright, Report of the Cervical Cancer
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53. Cartwright, Report of the Cervical
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54. M. R. McCredie et al., Consequences
in Women of Participating in a Study of
the Natural History of Cervical Intraepithelial Neoplasia 3, Australian and New
Zealand Journal of Obstetrics and Gynaecology 50, no. 4 (2010): 363---370. The
incidence of invasive cancer was 10 times
as high among the women who received
only a punch or wedge biopsy as among
women who received a cone biopsy or
hysterectomy; almost all the deaths from
cervical or vaginal vault cancer were
among the former group.
55. D. T. Rodgers, Age of Fracture
(Cambridge, MA: Belknap Press of Harvard University Press, 2011); T. Eagleton,
After Theory (London, UK: Penguin
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58. L. Bryder, National Womens, New
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62. Cartwright, Report of the Cervical
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63. I. Chalmers, Defendants of the
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ANALYTIC ESSAYS

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66. Reverby, Examining Tuskegee, 119.
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Comparison of Treated and Untreated

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John A Andrew Clinic 1 (1938): 41---52.
87. D. J. Rothman, Were Tuskegee &
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88. C. Taylor, Sources of Self: The Making
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90. Reverby, Examining Tuskegee, 149.
91. A. L. Fairchild and R. Bayer, Uses
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92. C. J. MacDonald, The Contribution
of the Tuskegee Study to Medical
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93. C. Elliott, The Big Selling, BillionDollar Pills Tested on Homeless People,
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95. S. R. Benatar, Reections and Recommendations on Research Ethics in
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78. J. R. Williams, The Declaration of

Helsinki and Public Health, Bulletin of the
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79. Williams, The Declaration of Helsinki and Public Health, 650.
80. E. D. Pellegrino, The Medical Profession as a Moral Community, Bulletin of
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81. Quoted in Reverby, Examining
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82. Quoted in Reverby, Examining
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83. Cartwright, Report of the Cervical
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84. McIndoe, Invasive Potential of
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85. Brandt, Racism and Research,
Brookes, Making of a Controversy.
86. Shweder, Tuskegee Re-examined.
Even this point is uncertain. In 1938
Vonderlehr wrote, Adequate treatment
[for syphilis] has not been freely available
to most indigent people for more than ten
to twelve years. R. A. Vonderlehr, A

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