Ethical issues in lab and diagnostic testing
AJPH HISTORY
August 2017, Vol 107, No. 8 AJPH Bayer Peer Reviewed Public Health Then and Now 1259
The End of Written Informed Consent for HIV Testing: Not With a Bang but a Whimper Ronald Bayer, PhD, Morgan Philbin, PhD, and Robert H. Remien, PhD
In 2014, only two states in the United States still mandated specific written informed consent for
HIV testing and, after years of controversy, New York ended this requirement, leaving only Ne-
braska. New York’s shift to opt-out testing meant that a singular feature of what had characterized
the exceptionalism surrounding HIV testing was eliminated. We trace the history of debates on
written informed consent nationally and in New York State. Over the years of dispute from when
HIV testing was initiated in 1985 to 2014, the evidence about the benefits and burdens of written
informed consent changed. Just as important was the transformation of the political configuration
of HIV advocacy and funding, both nationwide and in New York State. What had for years been the
subject of furious debate over what a rational and ethical screening policy required came to an
end without the slightest public protest. (Am J Public Health. 2017;107:1259–1265. doi:10.2105/
AJPH.2017.303819)
In 2014, New York and Nebraska were the only states that still required written
informed consent for HIV
testing, a signature element of
public policy that dated from
the 1980s. New York then
abandoned the requirement.
Remarkably, despite a long and
often bitterly contested past
that engaged public health offi -
cials, clinicians, AIDS advocacy
groups, and civil liberties orga-
nizations, the fi nal elimination
of written informed consent for
HIV testing occurred with little
public debate.
Conventionally, the story of
HIV testing policy involves the
commitments that began when
the evidence for addressing both
the clinical and public health
challenges of AIDS was still very
uncertain. The conventional
narrative argues that public
health offi cials slowly became
convinced by evidence demon-
strating that written informed
consent impeded the rollout of
HIV testing on a mass scale, a
process that culminated in 2006
when the Centers for Disease
Control and Prevention (CDC)
issued recommendations for an
opt-out approach without writ-
ten informed consent. Those
who opposed this opt-out
approach were equally certain
that the evidence did not sup-
port the claim that written in-
formed consent was a barrier to
sound public health practice. In
time, however, the overwhelm-
ing evidence—coupled with
political and funding shifts—
convinced many individuals
who had been most deeply
committed to written consent.
Deeply rooted opposition did
not, however, vanish.
We seek to locate the con-
troversy over written informed
consent in a broad political
context. We take account of
how and why groups that had
confronted each other for years
came to see the evidence so dif-
ferently and why the advocacy
community eventually yielded.
Although the evidence about the
burdens and benefi ts of written
informed consent had not signif-
icantly changed in the last years
of the controversy, the political
confi guration surrounding HIV/
AIDS policy had. What may
appear to be remarkable was, in
fact, a long time in coming.
LOOKING BACK When HIV antibody test-
ing fi rst became possible in
1985, there was considerable
uncertainty about the signifi -
cance of a positive fi nding and
the prognosis of HIV-infected
individuals. Within a year public
health offi cials embraced HIV
testing as a potentially signifi -
cant contribution to confront-
ing the evolving epidemic, but
many of the fi rst generation of
AIDS activists greeted the test
with alarm.1 The psychological
impact of the diagnosis in the
context of therapeutic impo-
tence, coupled with very realistic
concerns about discrimination,
stigmatization, and anxiety
about the prospect of a turn to
coercive public health policy,
shaped the worldview of activists
who sought to protect vulner-
able populations from privacy
intrusions and the deprivation of
the fundamental right to choose
whether to be tested. Advocates
argued that written informed
consent would provide necessary
protection for those who might
otherwise be dragooned by pub-
lic health offi cials. The national
AIDS activist movement quickly
succeeded in making written
informed consent, along with
pre- and posttest counseling, the
standard of care nationwide. The
fi rst ethical framework for con-
fronting the challenge of AIDS
and HIV testing embraced this
position2; HIV exceptionalism
defi ned the moment.3
AJPH HISTORY
AJPH August 2017, Vol 107, No. 81260 Public Health Then and Now Peer Reviewed Bayer
New York State’s experi-
ence exemplifi ed the situa-
tion. Looking back after three
decades, the director of New
York State’s AIDS Institute, part
of the State’s Health Depart-
ment, wrote,
New York State was an early
adopter of strong statutory
protections for persons seek-
ing HIV testing, including
required pretest counseling and
written informed consent.4
Under a 1989 law, written con-
sent became the legal norm, and
violations could result in civil
and criminal sanctions, includ-
ing fi nes of up to $5000 and
imprisonment for one year.
By the early 1990s public
health offi cials were increasingly
able to manage opportunistic
infections and create targeted
prevention programs, which
challenged the empirical and
ethical justifi cations for the
protective framework grounded
in written informed consent.
The discovery in the mid-1990s
that highly active anti-retroviral
therapy could prolong the lives
of HIV-infected individuals
shifted the national conversa-
tion. Nevertheless, it would
take years of debate before
the requirements of pre- and
posttest counseling and written
informed consent could be
dislodged.5 In the face of ongo-
ing sociopolitical anxieties and
the persistence of stigmatiza-
tion, evidence alone could not
override the politics of HIV
exceptionalism.
The erosion of the ear-
lier consensus was powerfully
underscored by the 2005 World
AIDS Day editorial by Thomas
Frieden, then commissioner
of health in New York City.
Written fi ve years before the
passage of the Aff ordable Care
Act provided protection against
denial of insurance coverage on
the basis of preexisting condi-
tions, the editorial asserted,
Given the availability of drugs
that can effectively treat HIV
infection and progress on anti-
discrimination initiatives per-
haps society is ready to adopt
traditional disease control prin-
ciples and proven interven-
tions that can identify infected
persons, interrupt transmission,
ensure treatment and case
management and monitor
infection and control efforts
throughout the population.6
Policies that made such identifi -
cation diffi cult could no longer
be justifi ed from the perspec-
tive of public health or clinical
medicine. The failure to adopt
more aggressive testing policies
and eliminate written consent
and routinize opt-out testing
would entail a wholesale denial
of the evidence that, “routine
voluntary screening for HIV is
indicated on the basis of clinical
effi cacy and cost-eff ectiveness.”7
Two months after Frie-
den’s editorial, the New York
City Department of Health
and Mental Hygiene issued a
detailed set of recommendations
that mirrored his views.8 It made
clear that the recommenda-
tions did not call for mandatory
testing but instead proposed the
routinization of HIV testing;
HIV testing laws would con-
tinue to require that all testing
be voluntary with specifi c docu-
mented oral consent. Penalties
for HIV testing without consent
would be increased.
Frieden’s forceful move
received backing from the New
York Times editorial board:
While there is a danger that
some patients might be hood-
winked into taking a test
they would otherwise shun,
it seems reasonable to treat
AIDS like any other infectious
or sexually transmitted disease.
Wider testing might save some
lives and alert people not to
spread the virus. . . . Surely
most patients would rather get
life extending treatments than
languish in neglect.9
Deeply concerned by the esti-
mate that 20% of HIV-
infected Americans did not know
their status, the CDC worked to
update its practices and poli-
cies. In September 2006, after a
careful review of the evidence,
the CDC issued new recom-
mendations for the routinization
of HIV screening that involved
an opt-out approach to consent
and the elimination of specifi c
written informed consent.10
“These new recommendations,”
said Kevin Fenton, director of
the National Center for HIV/
AIDS, Viral Hepatitis, STD,
and TB Prevention, “will make
routine HIV screening feasible
in busy medical centers where it
previously was impractical.”11
Thus the stage was set for a
cascade of regulatory and legisla-
tive changes across the nation.
The speaker of the American
Medical Association’s House of
Delegates called on states “to
reexamine legislation to allow
physicians to carry out the
new CDC recommendation.”12
Before the publication of the
CDC’s recommendations, 20
states required separate writ-
ten informed consent for HIV
testing. A review published in
the Journal of the American Medical
Association in 2011 concluded,
Nearly all states’ laws and
administrative codes were
compatible with current CDC
HIV testing recommendations
on consent and counseling.13
Some individuals, such as Peter
Staley, a founder of the AIDS
Coalition to Unleash Power,
supported this shift:
AJPH HISTORY
August 2017, Vol 107, No. 8 AJPH Bayer Peer Reviewed Public Health Then and Now 1261
I realize that abandoning
written informed consent
raises issues. People are
worried about privacy and
stigma. But the bottom line
is that this would probably
save lives and that’s why I’m
very much in favor of it.14
But many AIDS advocacy
groups dismissed such assess-
ments. After the CDC’s call
for the routinization of HIV
screening, 33 AIDS-related
groups, including the American
Foundation for AIDS Research,
Gay Men’s Health Crisis, the
HIV Law Project, Housing
Works, and Λ Legal, issued a joint challenge.15 Although
acknowledging that expanded
voluntary counseling and testing
was “good public health policy,”
they dismissed the necessity of
such reforms:
An expanded focus on test-
ing without counseling and
written informed consent will
put people at risk for testing
without their prior knowledge
or approval—a clear violation
of medical ethics and human
rights.
One activist claimed,
This is not informed consent,
and it is not even consent, it
was an attempt to ram HIV
testing down people’s throat
without their permission.16
NEW YORK NINE YEARS OF CONTENTION
In the face of such opposi-
tion, legislators in New York
State tried repeatedly from 2006
to 2010 to address the restrictive
legal constraints under which
HIV testing could occur. In this
period, 169 HIV-related bills
were introduced to the state
legislature, 12 of which explicitly
addressed informed consent.17
What unfolded was a mor-
ally charged debate regarding
whether written informed
consent impeded what all agreed
was crucial: that individuals who
were infected but unaware be
able to learn their HIV status.
The New York State Medical
Society, which exemplifi ed one
side of this argument, wrote a
letter to Assemblywoman Nettie
Myerson, a leading proponent of
routinizing HIV testing:
For over 20 years, physicians
and other health care person-
nel have not been allowed to
offer HIV testing as part of the
standard tests that are offered
patients.18
Paradoxically, the very excep-
tionalism that was designed to
protect those at risk had stigma-
tized the test for the disease.
In a New York State Assem-
bly public hearing in 2006,19
Richard Gottfried—who was
the chair of the Assembly’s
Health Committee and had
long-established links to New
York’s lesbian, gay, bisexual,
and transgender community—
continued to defend written
informed consent while making
clear his moral commitment to
both privacy and evidence-based
practice. He proposed an idea
fi rst developed by the Legal Ac-
tion Center called “mandatory
off er,” which required an explicit
off er of HIV counseling and
testing to all patients in health
care facilities without regard
to risks factors while retaining
written informed consent.20
Paradoxically, this new approach
would actually serve to increase
the time burdens associated with
testing in the clinic. Mandatory
off er became the rallying cry
of those who believed that the
protection of individual rights
was not at odds with the public’s
health. Gay Men’s Health Crisis,
among the oldest and most es-
tablished AIDS service organiza-
tion in New York, declared,
There is absolutely no scien-
tific evidence that the statu-
tory requirements of written
informed consent and counsel-
ing pose an actual barrier to
testing.21
Though activists anchored their
opposition in their view of the
evidence, what drove the pas-
sion to retain written informed
consent was a conception of
what respect for autonomy
and human dignity necessi-
tated. Housing Works, another
community-based organiza-
tion, also denounced the 2006
proposals made by New York
City’s health commissioner as
“One of the greatest threats ever
posed in the State of New York
to the privacy rights of people
living with AIDS and HIV.”22
The Long Island Minority AIDS
Coalition asserted that it was
“unconscionable” that patients
would no longer have the right
to written informed consent.23
In 2006 the fi rst crack
emerged in the previously solid
wall of opposition. The avail-
ability of powerful HIV-related
treatments was central to this
change, as was the mission shift
among AIDS advocacy orga-
nizations toward becoming
AIDS services organizations.
Harlem United became the
fi rst community-based AIDS
organization to assert that the
prevailing approach to testing
was inadequate:
It is difficult . . . not to view
separate written consent as
part of a broader practice of
testing that is failing us. . . .
Although our stance may dis-
turb colleagues, new realities
demand new tactics to stop
the spread of HIV and fur-
ther reduce AIDS deaths. We
should routinize HIV testing
AJPH HISTORY
AJPH August 2017, Vol 107, No. 81262 Public Health Then and Now Peer Reviewed Bayer
in accordance with CDC’s
new guidelines. . . . [Current]
HIV testing policy, amounts to
arguing that those most at risk
have a civil right to a greater
likelihood of spreading HIV
infection within their own
community or dying sooner of
AIDS.24
At an organizational level, a
striking racial/ethnic divide
had begun to emerge within
the AIDS advocacy community.
Harlem United was joined by
the Latino Commission on
AIDS and the National Black
Leadership Commission on
AIDS, which issued a summary
of evidence that unequivo-
cally demonstrated that written
consent was in fact a bar-
rier to routine HIV testing.25
Their opponents were largely,
although not exclusively, orga-
nizations led by gay White men,
longtime veterans of AIDS-
related battles.
As the legislative battle un-
folded from 2006 to 2010, the
divide between what most AIDS
activist groups held as morally
necessary and empirically un-
ambiguous and the views of the
public health and medical com-
munities continued to widen.
The New York State Associa-
tion of County Health Offi cials
in 200726 and the American
College of Obstetricians and
Gynecologists in 200827 joined
the Medical Society of the State
of New York to call for an end
to the exceptionalism sur-
rounding the state’s HIV testing.
In 2007, the deeply divided
state-appointed AIDS Advisory
Council voted fi ve to three to
support a resolution stating,
“The requirement for written
informed consent for HIV test-
ing in medical settings should be
removed.”28
Despite the certitude with
which opponents of written
consent described the evidence,
the bulk of the AIDS advo-
cacy community continued to
maintain that written informed
consent did not impede testing.
In 2007, a joint statement of the
American Civil Liberties Union
Law Project and Lambda Legal
asserted that a confl ict between
increased testing and strict
consent was “fi ctional.”29 In
2008, a Gay Men’s Health Crisis
commissioned review of the
literature asserted,
Some have cited written
consent as a barrier to testing.
. . . Such claims have proven
baseless and have not been
empirically documented in any
major peer reviewed academic
journal.30
CHANGE COMES TO NEW YORK
After decades of debate,
in 2010 the New York State
legislature voted overwhelm-
ingly to modify the state’s legal
framework for HIV testing;
the assembly voted 97 to 0, the
senate 42 to 10. The result was
a carefully crafted compromise.
The statute required a manda-
tory off ering of testing to people
aged 13 to 64 years in hospitals,
emergency departments, and
primary care settings. Rapid
HIV testing could be conducted
using oral consent except in jails
and prisons. Consent for testing
could be integrated into general
consent as long as a specifi c part
of the form provided the clear
option to decline the HIV test.
It is of singular importance that
once consent had been given
it was to be considered durable
and could be terminated only
when a patient explicitly sought
to withdraw it.31
Although this statute fi nally
permitted New York State to
move forward, the long-fought
controversy was not over. Patrick
McGovern, the chief executive
offi cer of Harlem United,
declared in 2010,
New York’s’ debate on HIV
testing . . . has been passionate
and sometimes contentious . . .
while this legislation falls short
on a true opt out approach,
the required offer of HIV test-
ing in all primary care settings
foretells an end to the current
practice of segregated and stig-
matized HIV testing.32
Gay Men’s Health Crisis, by
contrast, underscored that it had
protected written informed con-
sent under challenging political
circumstances:
For years we have held up the
standard of written informed
consent as a marker for ac-
ceptable legislation to expand
HIV testing. Although GMHC
[Gay Men’s Health Crisis] has
compromised on some long
standing principles to sup-
port this bill we still strongly
believe in the value of written
informed consent. This legisla-
tion contains as many adequate
safeguards to informed consent
as the current environment in
the legislature will allow.33
The compromise of 2010 was
clearly only a fi rst step for those
committed to ending written
informed consent. In 2012, the
state health department issued
a report that concluded that to
increase testing uptake the state
might “consider additional steps
to streamline and fully routin-
ize the off er of HIV testing.”34
One possibility would be to
accept the CDC’s recommenda-
tion for routine HIV screening
without specifi c consent but
with an option for patients to
decline to be tested. Indicative of
the importance of the evidence
derived from clinical experience,
the AIDS Institute concluded,
“Written consent was consis-
tently identifi ed as a barrier to
implementing the 2010 law.”35
AJPH HISTORY
August 2017, Vol 107, No. 8 AJPH Bayer Peer Reviewed Public Health Then and Now 1263
Refl ecting on his own shift,
Dan O’Connell, director of the
AIDS Institute, stressed that
“developments in science,” the
massing of evidence at both
state and national levels, had
compelled him to rethink policy.
For O’Connell, the deeply held
values of his opponents had
become an expression of an
evidence-resistant rigidity:
For a long time advocates were
not grappling with the need to
protect people’s health and get
the care they need. It took a
long time for the community
to catch up.
It was in this context that
Gottfried was noted as having
said how much of an outlier
New York State had become:
“For God’s sake it’s just us and
Nebraska.”36
In 2014, the AIDS Institute
forcefully moved to end written
informed consent through a
provision included (some critics
would say buried) in the gover-
nor’s 2014–2015 executive bud-
get. The more stringent written
requirements were retained only
in the potentially coercive con-
text of correctional settings. The
changed testing regulations were
packaged with other measures of
great importance to AIDS activ-
ists: creating a 30% salary rent
cap for HIV-infected people and
facilitating the sharing of clinical
data among health care providers
to promote “linkage and reten-
tion in care.”37 Commenting on
the milestone, O’Connell stated,
Eliminating most written con-
sent for HIV testing in New
York heralds the end of an
era in the decade’s long fight
against the epidemic.38
That New York took this step
was unsurprising, but that the
ultimate elimination of writ-
ten informed consent occurred
without a public battle was
stunning. The advocates, who
for years described written
consent as a pillar of an eff ec-
tive, rights-informed approach
to public health and who feared
that the elimination of such con-
sent would allow coercion and
mandatory testing, were silent.
Assemblyman Gottfried, a
veteran of the testing wars, noted
his surprise that he “had not
heard a peep” from advocates on
the proposed testing provisions
in the governor’s budget. His
offi ce therefore contacted the
leaders of New York’s advocacy
community:
What we heard back was that
nobody had a problem with
the change. . . . I didn’t re-
ceive a single e-mail or phone
call. [There was] almost a wall
to wall of unbroken silence.39
In large measure, the silence that
Gottfried encountered refl ected
a shift in priorities within the
advocacy community to pressing,
above all else, for programs and
policies to expand care for HIV-
infected persons. Committed to
ending AIDS in New York State,
AIDS advocates now viewed
collaboration with the AIDS
Institute as of central importance.
Most striking in this regard was
Housing Works’s shift after years
of publicly resisting the CDC’s
2006 recommendations and
not joining Harlem Untied, the
Latino Commission on AIDS,
and the Black Leadership Com-
mission on AIDS in their earlier
calls for change. Charles King,
the executive director of Hous-
ing Works, noted that treatment
availability was a “game changer.”
To make the promise of the end
of AIDS real, it was essential to
bring people into care. This was
not, he underscored, a politi-
cal tradeoff to win the support
of the AIDS Institute for the
new radical goal; abandoning a
long-held policy perspective was
not easy. Deeply rooted ideas do
not yield without organizational
strain. With clear reference to
those who had refused to shift, he
said, “We have an emotional at-
tachment to ideas. No one wants
to admit they had been wrong.”
Speaking of himself he continued
“I get a twinge. . . . We are on the
opposite side of an issue than we
were years ago.”40
Ten weeks after this policy
shift, Governor Andrew Cuomo
clarifi ed what the new targets
were: reduce new HIV infec-
tions in New York from 3000 to
750 by 2020 and reduce the rate
at which HIV-infected persons
progressed to AIDS by 50%.
These combined eff orts would
cause the prevalence of AIDS in
New York State to decrease for
the fi rst time since the start of
the epidemic.41
But what of those who had
not publicly embraced an end
to written informed consent but
who chose not to engage in fur-
ther debate? For some, the pros-
pect of battling the AIDS Institute
with whom it would be necessary
to develop programmatic eff orts
over the next years seems stra-
tegically counterproductive. But
much more was at stake.
Corrine Carrie of the New
York Civil Liberties Union
acknowledged that it was
increasingly diffi cult to argue
that written informed consent
did not impede HIV testing and
that instead they should frame
the argument with protecting
people’s right to choose to be
tested. In 2009, she had already
noted, “It’s gotten to the point
where only lawyers and sophisti-
cated advocates understand these
arguments.”42 Because of the
shifting institutional realities of
the AIDS advocacy community
in New York, that constitu-
ency was shrinking. “Lawyers
AJPH HISTORY
AJPH August 2017, Vol 107, No. 81264 Public Health Then and Now Peer Reviewed Bayer
funding [has been] decimated,”
said Catherine Hanssens, who
had for years been among the
most vocal opponents of limiting
consent-related protections in
HIV testing.43 Simultaneously,
the HIV Law Project, which had
played such a prominent role in
earlier battles, had been absorbed
by Housing Works. Housing
Works now supported elimi-
nating written consent, while
focusing energy on providing
treatment and ancillary services
to those in need.
It was in this political context
that an urgent online discussion
among those who still supported
written informed consent took
place. None thought a renewed
battle could have a meaningful
impact, “the horse was out
of the barn.” Tracy Gardner
of the Legal Action Center
spoke candidly of being “worn
out, sick of the fi ght.”44 For each
organization that might lead the
battle, however futile, a strategic
decision had to be made. Hans-
sens said,
When you are thinly funded,
thinly staffed you have to
make choices. . . . We have
lost the battle in the context of
HIV testing.45
For Carrie, a new battle
would not be a wise invest-
ment. . . . [We must ask]
which threat is most serious?
Where are we likely to win?46
With no one willing to assume
leadership of a renewed battle, a
collective decision was made to
abandon what had been a defi n-
ing issue for the HIV advocacy
community. By deed if not by
word, the struggle to preserve
written informed consent had
come to an end. With an obvi-
ous need to view this outcome
in its broader contemporary
context and to maintain a sense
that the struggle had not been in
vain, it was possible for some to
say that the legacy of advocates’
work was alive even though
written informed consent was
over.
CONCLUSIONS There is a rich literature on
the history of science-related
controversies that seeks to
explain how they emerge, persist
over time, and are resolved.47
That literature shows that only
part of the story is told by nar-
ratives that frame the end of
such confl icts as the result of the
triumph of evidence in the face
of uncertainty or because of the
emergence of new evidence.48
The careful examination of
scientifi c controversies sug-
gests that, whatever the role of
evidence, more is involved: that
epistemic, political, and social
factors are virtually always at
play. How evidence is under-
stood and indeed disagreement
about what should count as
evidence must be examined in
historical context.
The controversy over written
informed consent did not end
because the evidence had at last
become defi nitive. A similarly
fraught and linked debate oc-
curred on pretest and posttest
counseling for HIV. There was
also a protracted struggle49 for
evidence and ethics, but the
persistence of those arguing
for counseling diff ered greatly
from those arguing for writ-
ten consent. Important funding
streams had long underwritten
support for such eff orts, and a
virtual army of counselors were
employed across the nation with
an institutional commitment to
maintaining their role—and em-
ployment. Institutional resistance
helps to explain the politics of
de-implementation, but the
written consent story was very
diff erent. There was no army
of workers whose professional
identities depended on testing,
and the numbers of individuals
who found the issue of written
consent to be morally compel-
ling had dramatically declined.
Written informed consent could
no longer marshal the numbers
to resist change.
At an individual level, the
controversy ended because of
the exhaustion of those who,
under diff erent circumstances,
might have persisted. New York
was left behind, and so were lo-
cal activists, who knew that their
allies across the nation had also
conceded. A bandwagon-like
process had occurred.50 Those
involved in HIV advocacy, care,
and policy had come to agree on
a new paradigm for testing. On
a political level, AIDS advocates
had concluded that because of
the social and funding context
they should adjust their agendas
to best serve those they were
committed to. In doing so, they
made it clear that despite its cen-
tral role in the formative years of
the AIDS epidemic, both locally
and nationally, written informed
consent for HIV testing was
no longer a priority, no longer
worth the fi ght.
ABOUT THE AUTHORS Ronald Bayer is with the Center for the
History and Ethics of Public Health, Mail-
man School of Public Health, Columbia
University, New York, NY. Morgan Philbin is
with the Department of Sociomedical Sciences,
Mailman School of Public Health. Robert H.
Remien is with the HIV Center for Clinical
and Behavioral Studies, New York State Psy-
chiatric Institute, Columba University Medical
Center, New York.
Correspondence should be sent to Ronald
Bayer, PhD, Center for the History and Ethics
of Public Health, Mailman School of Public
Health, Columbia, University, Professor, 722
West 168th Street, Room R928, New York,
NY 10032 (e-mail: rb8@columbia.edu).
Reprints can be ordered at http://www.ajph.
org by clicking the “Reprints” link.
This article was accepted March 27, 2017.
doi: 10.2105/AJPH.2017.303819
CONTRIBUTORS All authors contributed to the conceptual-
ization, research, and writing of this article.
AJPH HISTORY
August 2017, Vol 107, No. 8 AJPH Bayer Peer Reviewed Public Health Then and Now 1265
9. “Modifying the AIDS Laws,” New
York Times, February 6, 2006:22.
10. Centers for Disease Control and
Prevention, “Revised Recommen-
dations for HIV Testing of Adults,
Adolescents and Pregnant Women in
Health Care Settings,” MMWR Recom-
mendations and Reports 55, no. RR–14
(2006):1–17.
11. V. S. Elliott, “CDC Moves to Put
HIV Testing Into Routine Care,” Amer-
ican Medical News 49, no. 39 (2006):1.
12. Ibid.
13. Bernard Branson, personal com-
munication.
14. S. Sternberg, “CDC: Make HIV
Tests Part of Routine Care for All,”
http://usatoday30.usatoday.com/news/
health/2006-09-21-hiv-testing_x.htm
(accessed August 18, 2016).
15. AIDS Foundation of Chicago,
“Federal HIV Testing Initiatives Can
Only Succeed With Expanded Health-
care, Patient and Provider Education,”
http://www.aidschicago.org/pdf/2006/
adv_testing_statement.pdf (accessed
April 24, 2017).
16. R. Bayer and A. L. Fairchild, “Chang-
ing the Paradigm of HIV Testing—The
End of Exceptionalism,” New England
Journal of Medicine 355, no. 7 (2006):649.
17. O’Connell et al., “Evolution of
Human Immunodeficiency Virus,” S5.
18. Letter to Assemblywoman Nettie
Mayersohn.
19. New York State Assembly Standing
Committee on Health, “HIV Testing,
Counseling and Informed Consent,”
December 20, 2006 [Public Hearing].
20. Ibid., 51.
21. Ibid., 171.
22. Ibid., 65.
23. Ibid., 320.
24. P. J. McGovern and M. G. Farley,
“The Routinization of HIV Testing
as a Civil Right.” [Unpublished
manuscript]
25. “Harlem United, Latino Commission
on AIDS, NBLCA, ‘The Research Shows
. . .’” 2009. [Unpublished manuscript]
26. J. Bennison, “Legislation Implement-
ing the Centers for Disease Control HIV
Testing Guidelines” [Letter to Assembly-
woman Nettie Mayersohn].
27. American College of Obstetricians
and Gynecologists, “An Act to Amend
the Public Health Law, in Relation to
HIV Testing,” June 6, 2008 [memoran-
dum in support].
28. AIDS Advisory Council, “Reso-
lution for Consideration Related to
Proposed Changes to Article 27F of
the Public Health Law,” https://www.
health.ny.gov/diseases/aids/providers/
regulations/testing/section_2781.htm
(accessed April 24, 2017).
29. American Civil Liberties Union,
“Increasing Access to Voluntary HIV
Testing: The Importance of Informed
Consent and Counseling in HIV Testing,”
https://www.aclu.org/increasing-access-
voluntary-hiv-testing-importance-
informed-consent-and-counseling-hiv-
testing (accessed April 24, 2017).
30. D. J. Cochrane, “Gay Men’s Health
Crisis: HIV Testing and Written, In-
formed Consent: An Analysis of Current
Debates,” 2008, http://img.thebody.
com/gmhc/pdfs/2008_testing_white.pdf
(accessed April 18, 2017).
31. G. S. Birkhead, D. A. O’Connell,
S. Y. Leung, and L. C. Smith, “Evaluat-
ing the New York State 2010 HIV
Testing Law Amendments: Context,
Challenges, and Conclusions,” Journal of
Acquired Immune Deficiency Syndromes 201,
no. 68 (2015):s1–s4.
32. Harlem United, “Harlem United
Commends the NYS Legislature for
Passing Testing Legislation and Urges
Governor Paterson Sign,” July 1, 2010
[press release].
33. Gay Men’s Health Crisis, “Memo-
randum of Support S8227 (Duane)/
A11487 (Gottfried),” 2010.
34. New York State Department of
Health, “Laws of 2010 HIV Testing
Law: Mandated Report,” https://www.
health.ny.gov/diseases/AIDS/providers/
testing/law/docs/chapter_308.pdf
(accessed April 24, 2017).
35. O’Connell et al., “Evolution of
Human Immunodeficiency Virus,” S7.
36. R. Bayer Interview of Dan
O’Connell, August 19, 2014.
37. New York State Assembly, 2013–
2014 Regular Sessions, http://assembly.
ny.gov/leg/?default_fld=&leg_video=&b
n=A07782&term=2013&Text=Y
(accessed March 17, 2016).
38. O’Connell et al., “Evolution of
Human Immunodeficiency Virus,” S8.
39. R. Bayer Interview of Richard
Gottfried, September 18, 2014.
40. R. Bayer Interview of Charles King,
August 15, 2014.
41. New York State, Department of
Health, “Get Tested. Treat Early. Stay
Safe. End AIDS,” http://www.health.
ny.gov/diseases/aids/ending_the_epi-
demic/docs/blueprint.pdf (accessed
March 17, 2016).
42. R. Bayer Interview of Corrine
Carrie, September 23, 2009.
43. R. Bayer Interview of Catherine
Hanssens, September 18, 2014.
44. R. Bayer Interview of Tracy
Gardner, August 26, 2014.
45. R. Bayer Interview of Catherine
Hanssens, September 18, 2014.
46. R. Bayer Interview of Corrine
Carrie, September 23, 2009.
47. B. Martin and E. Richards, “Sci-
entific Knowledge Controversy and
Public Decision-Making,” in Hand-
book of Science and Technology Studies,
ed. S. Jassanoff, Gerald E. Markle,
James C. Peterson, and Trevor J.
Pinch (Newbury Park, CA: Sage,
1995), 506–526.
48. S. Sismondo, An Introduction to Sci-
ence and Technology Studies (Oxford, UK:
Wiley, 2009).
49. Johns et al., “Rise and Decline.”
50. J. H. Fujimura, “The Molecular Bio-
logical Bandwagon in Cancer Research:
Where Social Worlds Meet,” Social Prob-
lems 35, no. 3 (1988):261–283.
ACKNOWLEDGMENTS This work was supported by the HIV
Center for Clinical and Behavioral
Studies (grant NIMH P30MH43520);
the National Institute on Drug Abuse
(grant Ko1DA039804A to M. P.); and the
HIV Center for Clinical and Behavioral
Studies (grant NIMHP30MH43520 to
R. H. R.).
ENDNOTES 1. R. Bayer, Private Acts, Social Conse-
quences: AIDS and the Politics of Public
Health (New York, NY: Free Press,
1989).
2. R. Bayer, C. Levine, and S. Wolf,
“HIV Antibody Screening: An Ethical
Framework for Evaluating Proposed
Programs,” Journal of the American Medical
Association 256, no. 13 (1986):1768–
1774.
3. R. Bayer, “Public Health Policy and
the AIDS Epidemic: An End to HIV
Exceptionalism?” New England
Journal of Medicine 324, no. 21
(1991):1500–1504.
4. D. A. O’Connell, E. G. Martin, B.
Culter, and G. S. Birkhead, “The Evolu-
tion of Human Immunodeficiency Virus
Testing Requirements in New York
State, 1989–2013,” Journal of Acquired
Immune Deficiency Syndromes 68, suppl. 1
(2015):S55.
5. D. M. Johns, R. Bayer, and A. L.
Fairchild, “Evidence and the Politics
of Deimplementation: The Rise and
Decline of the Counseling and Testing
Paradigm for HIV Prevention at the
US Centers for Disease Control and
Prevention,” Milbank Quarterly 94, no. 1
(2016):126–162.
6. T. R. Frieden, M. Das-Douglas, S. E.
Kellerman, and K. J. Henning, “Apply-
ing Public Health Principles to the HIV
Epidemic,” New England Journal of Medi-
cine 353, no. 22 (2005):2397–2402.
7. Ibid., 2400.
8. New York City Department of
Health and Mental Hygiene, “Stopping
the HIV/AIDS Epidemic in New York”
(New York, NY; 2006) [PowerPoint
presentation].
Copyright of American Journal of Public Health is the property of American Public Health Association and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.