Human Rights and HIV Prevention, Treatment, and Care for People Who Inject Drugs: Key Principles and Research Needs

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Abstract
Efforts to provide HIV prevention, treatment, and care to injecting drug users (IDU) are shaped by tensions between approaches that regard IDU as criminals and those regarding drug-dependent individuals as patients deserving treatment and human rights. Advocates for IDU health and human rights find common cause in urging greater attention to legal frameworks, the effects of police abuses, and the need for protections for particularly vulnerable populations including women and those in state custody. Arbitrary detention of drug users, and conditions of pretrial detention, offer examples of how HIV prevention and treatment are adversely impacted by human rights abuse. National commitments to universal access to prevention and treatment for injecting drug users, and the recognition that users of illicit substances do not forfeit their entitlement to health services or human dignity, offer a clear point of convergence for advocates for health and rights, and suggest directions for reform to increase availability of sterile injection equipment, opiate substitution treatment, and antiretroviral therapy. For IDU, protection of rights has particular urgency if universal access to HIV prevention and treatment is to become an achievable reality.
SUPPLEMENT ARTICLE
Human Rights and HIV Prevention, Treatment, and Care
for People Who Inject Drugs: Key Principles and
Research Needs
Daniel Wolfe, MPH, MPhil,* and Jonathan Cohen, JD, MPhil†
Abstract: Efforts to provide HIV prevention, treatment, and care to
injecting drug users (IDU) are shaped by tensions between approaches
that regard IDU as criminals and those regarding drug-dependent
individuals as patients deserving treatment and human rights.
Advocates for IDU health and human rights find common cause in
urging greater attention to legal frameworks, the effects of police
abuses, and the need for protections for particularly vulnerable
populations including women and those in state custody. Arbitrary
detention of drug users, and conditions of pretrial detention, offer
examples of how HIV prevention and treatment are adversely impacted
by human rights abuse. National commitments to universal access to
prevention and treatment for injecting drug users, and the recognition
that users of illicit substances do not forfeit their entitlement to health
services or human dignity, offer a clear point of convergence for
advocates for health and rights, and suggest directions for reform to
increase availability of sterile injection equipment, opiate substitution
treatment, and antiretroviral therapy. For IDU, protection of rights has
particular urgency if universal access to HIV prevention and treatment
is to become an achievable reality.
Key Words: antiretroviral, buprenorphine, drug dependence, human
rights, methadone, prison, police, substance abuse
(J Acquir Immune Defic Syndr 2010;55:S56–S62)
OVERVIEW: DRUG-USER HEALTH IN A HUMAN
RIGHTS FRAME
‘Drug users are vulnerable people. They suffer from
inadequate medical assistance. They experience discrimina-
tion, invasion of privacy, police harassment, and social
marginalization. They have to endure arbitrary deprivation of
rights, such as mandatory medical treatment. Their capacity to
defend their interests is impaired by social stigmatization. One
would assume that society’s majority would oppose
such violations. After all, arbitrary searches, nightclub raids,
compulsory urine tests, and wrongful appropriation of
confidential medical files are injustices suffered by nonusers
as well. But the majority accepts the invasion of privacy in an
attempt to have a drug-free environment’’—Judit Fridli, Chair,
Hungarian Civil Liberties Union, 2003.
Efforts to provide HIV prevention, treatment, and care to
injecting drug users (IDU) are shaped by a basic tension. On
the one hand, public health agencies and clinicians recognize
that drug-dependent individuals suffer from a chronic and
relapsing condition. On the other, law enforcement officials
pressured to curb demand and supply for illicit drugs regard
IDU primarily as participants in illegal exchange, rather than
as individuals in need of services. These tensions are borne out
in policies that simultaneously seek to increase access for IDU
to prevention and treatment services and to reduce demand for
illegal drugs through punitive measures, including arrests and
imprisonment. Conflicting strategies are frequently pursued
simultaneously in developed and developing countries alike,
and at the inter national level where tensions between those
who call for a ‘drug-free world’ and those who urge public
health approaches to contain drug dependence and HIV have
led to what some have called ‘double vision, ‘systematic
incoherence’ or a ‘dis-United Nations.
1,2
HIV/AIDS attributed to injecting drug use is currently
reported in 119 countries, and IDU account for nearly one-
third of new HIV infections outside sub-Saharan Africa.
3
The
need for a public health response to the intertwined epidemics
of drug abuse and HIV is clear, and fortunately, so is the
evidence on the best practices available to contain them.
Provision and exchange of sterile injecting equipment is
among the most thoroughly studied and effective of these,
having been demonstrated to reduce the spread of HIV by
taking contaminated syringes out of circulation without
encouraging or increasing drug use.
4
Methadone and
buprenorphine, prescribed as opiate substitution therapies
(OST), are effective in reducing craving and use of opiates and
have been added to the list of essential medicines by the World
Health Organization (WHO).
5
Citing evidence that IDU, when
offered HIV testing and antiretroviral (ART) adherence
support, can achieve significant virologic benefits,
6,7
WHO
has issued guidelines for the use of first-line and second-line
ART for IDU, with instructions that drug users should not be
denied treatment on the basis of their IDU history or active
drug use.
8
In countries such as the Netherlands, Switzerland,
From the *Open Society F oundations Public Health Program, International Harm
Reduction Development Program, New York, NY; and Open Society
F oundations Public Health Program, Law and Health Initiative, New York, NY.
The authors are supported by the Open Society Foundations Public Health
Program, New York, NY.
Correspondence to: Daniel Wolfe, MPH, MPhil, Open Society F oundations Public
Health Pro gram, International Harm Reduction Development Program, 400
West 59th Street, New York, NY (e-mail: dwolfe@sorosny.org).
Copyright Ó 2010 by Lippincott Williams & Wilkins
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and France, a combination of HIV prevention and treatment,
including prescriptions for OST to treat opiate dependence,
have reduced HIV incidence among IDU to nearly zero.
9,10
Although the preventive potential of universal ART access
(‘‘treatment as prevention’’) has yet to be adapted and
evaluated for sexual, much less parenteral, transmission of
HIV, preliminary findings suggest its effectiveness among
IDU. In a Vancouver cohort of IDU, researchers found that
reductions in community HIV-1 RNA levels as a result of
ART correlated significantly with reduced HIV incidence,
independent of unsafe sexual behaviors and sharing of
used syringes.
11
The political viability of comprehensive global HIV
prevention and treatment for IDU remains an open question.
IDU account for the largest share of cumulative HIV infections
in 20 countries of Eastern Europe and Asia.
12
In most of these
where data are available, IDU represent a minority of those on
ART, despite being the majority of those in need.
12–15
Although ‘universal access’ to HIV prevention and treatment
is affirmed by many governments and international organ-
izations,
16
needle exchange and methadone treatment pro-
grams in many low-income and middle-income countries
remain few in number, underfunded, and constrained by
regulation and lack of political will.
12,17
In Russia, OST for
opiate addiction is banned by law. IDU and outreach workers
in countries as varied as Bangladesh, Kazakhstan, India,
Indonesia, and Ukraine, experience denial or confiscation of
essential medicines, extortion, planting of evidence, and
arbitrary detention by police.
18–27
‘Harm reduction is like
a sandcastle, a Malaysian peer educator active in syringe
provision told an international conference last year. ‘Com-
munity builds it up, and law enforcement tears it down.
28
HUMAN RIGHTS AND HIV PREVENTION AND
TREATMENT FOR IDU: A SHARED FRAMEWORK
Increasingly, scientists have been looking beyond indivi-
dual IDU to their ‘risk environments, the various physical,
geographic, social, economic, and political structures that
influence IDU risk behaviors and adverse health outcomes.
29–31
Some have urged attention to the ‘case of the missing cop’’: the
effects, often unacknowledged, of criminal law and law
enforcement on IDU risk for overdose, treatment interruption,
and HIV or other blood-borne infections.
32
Police crackdowns,
arrests, and incarceration are correlated with hurried injections,
sharing of injection equipment, treatment interruption, and
other adverse health effects.
33–37
Policies and practices in health
care settings, including denial of ART to current or former
IDU,
12,33,38
erroneous physician assumptions about patient
compliance,
39,40
and lack of access to methadone treatment for
IDU requiring hospitalization or tuberculosis treatment
12,41
have
been shown to impede an effective HIV response. In multiple
countries with injection-driven HIV epidemics, those most in
need of drug-dependence treatment or ART are required to have
their names placed in registries to access public clinics.
Registries are shared with the law enforcement, and those regis-
tered subjected to mandatory drug testing and stop-and-frisk
actions by the police,
42
and to denial of employment, driving
licenses, and child custody.
43
Fear of being added to such regis-
tries is a major barrier to IDU in need of health services.
19,43–46
Researchers and health providers who work with IDU
have long examined the nexus of service provision, risk
environments, and human rights. The most elemental concerns
of human rights law are also determinants of the health
outcomes of IDU, including incarceration, violence, stigma-
tization, isolation, and discrimination. A second generation of
human rights standards protects economic and social rights
including ‘the right to the highest attainable standard’ of
health. While human rights advocates generally draw upon
a different set of normative standards from those used by
health providers—they are more likely to cite the Universal
Declaration of Human Rights or one of the 9 cornerstone,
legally binding international human rights conventions
47
than
they are guidelines from the WHO or the National Institute on
Drug Abuse—yet they have found common cause with those
working to reduce the adverse health impacts of illicit drug
use.
48–50
Core principles of human rights include liberty and
security of the person, autonomy, privacy, and freedom from
cruel, inhuman, or degrading treatment. These clearly overlap
with elements of effective health programming for IDU, where
client trust and the building of ‘therapeutic alliances’ have
proven critical.
51,52
Researchers and health providers working
with IDU have long recognized the importance of un-
derstanding how hostile police environments impact in-
dividual risk behaviors.
53–56
Health services are ineffective if
people are unable or afraid to use them.
As debates over provider-initiated HIV testing make
clear,
57,58
the pragmatic alliance between public health and
human rights continue to be tested. The emphasis by human
rights advocates on limiting state action rankles both public
health officials concerned that protection of individual
liberties such as infor med consent will impede protection of
public health, and policymakers who believe that national
policy should not be dictated by multilateral agreements
monitored in foreign capitals.
59
Human rights proponents
differ as well over the degree to which the concept of the ‘right
to health’ should be used to influence decisions on allocation
of resources by national governments.
60,61
In the case of HIV,
however, explicit commitments to universal access to HIV
prevention and treatment, and recognition that constraints on
individual liberty in the name of law enforcement impede
public health, are clear points of convergence for advocates of
health and human rights. The special concern of human rights
conventions toward such vulnerable groups as women,
children, racial and ethnic minorities, persons with disabilities,
and those in prison or other custodial settings also resonates
with HIV prevention and treatment professionals who are
increasingly focused on ‘most at-risk populations. Table 1
provides a shared framework where human rights principles
and best practices for HIV prevention and treatment for people
who inject drugs can be seen to converge (Table 1).
The importance of human rights protections in HIV
services is underscored b y the epidemiology in places where
these protections have been igno red. In Thailand, for example,
a 2003 gov ernment-sponsored war on drugs led to arrest quotas,
blacklists, forced drug testing, the detention of more than 50,000
people in military-run ‘treatment camps, and the death of more
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than 2800 individuals in what human rights experts termed
‘e xtrajudicial executions.
68
Researchers and HIV service
pro viders reported dramatic declines in participation in clinical
trials and HIV prevention programs, although HIV infection rates
among IDU continued unabated.
69
In Russia, the United States,
and man y other countries, prolonged imprisonment and pretrial
detention of drug users for nonviolent offenses concentrates HIV-
infected and uninfected individuals in penitentiary settings where
HIV risk behaviors continue but where basic precautionary
measures to prevent HIV, such as condoms or sterile injection
equipment, are unav ailable. The ob vious result is that needle
sharing and unsafe sex occur , with ensuing spread of HIV among
inmates in the institution and ev entuall y into the wider
community when they are released.
70–72
Even when guided by evidence, the health benefits of
HIV prevention for IDU do not always translate to increased
popular or political support. As recently as January 2010, after
years of declines in HIV prevalence among New York City
IDU as a result of needle exchange and safer injection
education,
73
a special narcotics prosecutor and chair of the
City’s Council’s public safety committee charged that a De-
partment of Health publication on safer injection was a ‘how-
to manual’ for drug use and should be withdrawn.
74
Table 2
explains why this and other health-deterring approaches may
violate international human rights conventions and basic
human rights.
SOCIAL DETERMINANTS AS HUMAN RIGHTS
VIOLATIONS? THE CASE OF ARBITRARY
DETENTION
In virtually all low-income and middle-income coun-
tries, greater numbers of IDU are found in prisons, pretrial
detention facilities, police lock-ups, and forced rehabilitation
centers than in the health system.
20
Although the exact
numbers are unknown, estimates are that 30% of prisoners
worldwide are dr ug users who have never been tried or
convicted of any offense.
76
In Asian countries such as China
and Vietnam, an estimated 400,000 drug users or more are
interned in ‘detoxification’ or ‘rehabilitation’ centers where
they spend 2 years or longer without criminal charges,
appearance before a judge, right of appeal, or evaluation by an
addiction treatment professional.
20
Pretrial and arbitrary detention subject detainees to
numerous health risks associated with ov ercro wding, violence,
physical and psychological abuse, and poor infection control.
Asian drug-detention centers are run by police and the military.
They provide no e vidence-based treatment for drug dependence
and limited or no treatment for HIV or tuberculosis, despite the
high pre valence of these infections. In China and Vietnam, those
who test positive for illicit drug use are forced to labor in the
service of pri v ate companies, and beatings, food depriv ation,
and even torture are punishments for those who fail to meet
production quotas or attempt to escape.
20
In all countries,
detainees are most at risk for beatings, torture, or cruel and
degrading treatment immediately after their arrest. Police in
Ukraine and Kazakhstan hav e reportedly used the threat of
painful withdra w al symptoms to coerce confessions from drug-
dependent indi viduals.
23,25
This has been identified as torture b y
a United Nation (UN) special rapporteur .
77
Detention en viron-
ments that contribute to infection and death have also been
identified as sites of multiple other violations of human rights,
including the right to due process, the right to health, and when
detainees die without medical attention, the right to life.
78,79
Identifying arbitrary and pretrial detention practices as
human rights violations may also lead to practical, political,
and structural improvements. In recent cases before the
European Court of Human Rights, the governments of Ukraine
and Russia were ordered to compensate the families of drug
users who had died in pretrial detention, thus increasing
pressure on the governments to improve health in detention;
the Court also ordered the release of detainees suffering life-
threatening conditions.
80,81
The European Court found the
Republic of Georgia negligent for not providing hepatitis C
treatment to a detainee infected while in prison.
82
The
Standard Minimum Rules on the Treatment of Prisoners,
83
together with independent monitoring bodies such as the
Committee on the Prevention of Torture and the Working Group
on Arbitrary Detention, have exerted additional pressure on
governments to make needed reforms to reduce overcrowding
and attendant health effects; these reforms may include the
provision of legal aid, standardization of bail policies at the
pretrial stage, and inspection of pretrial detention facilities by
independent experts.
84
Such reforms can have a significant
impact on the health of prison populations, arguably even more
significant than allowing access to condoms, sterile syringes, or
opiate substitution treatment because they address both the
worst forms of abuse and some of the root causes of adverse
health trends within the criminal justice system.
85
TOWARD A RESEARCH AGENDA ON HEALTH
AND HUMAN RIGHTS OF DRUG USERS
Recent years have seen leading medical journals
86
and
UN officials, such as the UN High Commissioner for Human
Rights and the Executive Director of the UN Office on Drugs
TABLE 1. Shared Frameworks: Human Rights Principles and Best Practices for HIV Prevention and Treatment for IDUs
Human Rights Principles: Universal Declaration of Human
Rights and Nine Core Treaties
47
Best Practices for HIV Prevention
and Treatment for IDUs
Autonomy; dignity; freedom from discrimination, cruel, inhuman
and degrading treatment; and access to health and information.
Trust, therapeutic alliance, confidential and respectful approach
52,62
Special protection for the most vulnerable: prisoners, women, children,
ethnic minorities, etc.
Targeted services for high-risk or ‘most at risk populations’ (MARPS)
63–66
Focus on the responsibilities of the state. Move from the individual to the structural; attention to ‘risk environment’
33,67
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and Crime,
87,88
support the importance of protecting the
human rights of people who use drugs. The programmatic
features of an ‘enabling environment’ for HIV prevention and
treatment for IDU, however, have yet to be identified and
evaluated. Implementers of programs for IDU have observed
that the integration of legal aid and harm reduction can deter
police from conducting surveillance nearby, giving providers
the space needed to treat drug users with respect and ensure
access to health services.
89
Legal aid at the pretrial stage may
help to persuade a judge not to detain a criminal defendant,
thus averting the harmful effects of incarceration. Unfortu-
nately, there are few evaluations of these commonsense
observations or of the pathways by which they may lead to
improved health outcomes for IDU.
Evaluative studies are also needed on whether the risk
environment for people who use drugs and have HIV improves
as a result of changes by law enforcement and health officials.
Various tools, including police training, protocols, complaint
mechanisms, and anticorruption measures have been used to
change law enforcement practices that deter drug users from
seeking health services, but their precise public health benefits,
if any, remain unknown. Similarly, an extensive literature
documents the effects of individual-level barriers to and support
for adherence by IDU, but few metrics are available to measure
systemic bar riers that decrease ART adherence by people who
use drugs or the efficacy of systemic remedies.
30,46
Policies that
prohibit active drug users from receiving ART, that require
collateral fees and paperwork before treatment initiation, or that
demand that IDU abstain from illicit drugs or enroll in
substitution treatment before receiving tuberculosis treatment or
ART are unethical and likely lead to ‘treatment failure.
Given the impact of pretrial and arbitrary detention on
health, structural interventions are needed to enhance
protections in police lockups and to reform pretrial justice
systems. Pretrial justice programs in Russia, Mexico, and
Nigeria currently seek to reduce the numbers of persons
detained, yet these same countries disproportionately detain
IDU at risk for HIV. The goals and outcomes of these pretrial
TABLE 2. Impediments to HIV Prevention and Treatment and Corresponding Rights Violations
Human Right Health Deterring Policy or Practice Human Rights Standard Violated
The right to freedom from torture
and cruel, inhuman and
degrading treatment
Investigators force drug users into unmedicated
withdrawal to extract confessions.
ICCPR 7: No one shall be subjected to torture or to
cruel, inhuman or degrading treatment or
punishment. In particular, no one shall be
subjected without his free consent to medical or
scientific experimentation.
Drug users entering ‘treatment’ are caned, verbally
abused, and made to crawl through animal
excrement as ‘orientation.’
ICCPR 10(1): All persons deprived of their liberty
shall be treated with humanity and with respect for
the inherent dignity of the human person.
Patients are chained, handcuffed or caged during
withdrawal or as punishment for insubordination.
The right to freedom from
arbitrary arrest and detention
Drug users are involuntarily committed to years of
‘treatment’ without medical or judicial review or
right of appeal.
ICCPR 9(1): Everyone has the right to liberty and
security of person. No one shall be subjected to
arbitrary arrest or detention.
The right to a fair trial An HIV-infected drug user is held for months in
pretrial detention without medical care.
ICCPR 9(3): Anyone arrested or detained on
a criminal charge shall be brought promptly before
a judge or other officer authorized by law to
exercise judicial power and shall be entitled to trial
within a reasonable time or to release.
The right to privacy Police demand drug tests from or detain those who
‘look like drug users.
ICCPR 17(1) No one shall be subjected to arbitrary or
unlawful interference with his privacy, family,
home or correspondence, or to unlawful attacks on
his honor and reputation.
A clinic gives lists of drug treatment patients to
police.
The right to freedom of
expression and information
The government bans publications about methadone
or safer injection, claiming they encourage illegal
activity.
ICCPR 19(2): Everyone shall have the right to
freedom of expression; this right shall include
freedom to seek, receive and impart information
and ideas of all kinds.
The right to the highest attainable
standard of health
The government confiscates syringes from drug users
or bans methadone treatment for opiate
dependence.
ICESCR 12(1) The States Parties to the present
Covenant recognize the right of everyone to the
enjoyment of the highest attainable standard of
physical and mental health. (2) The steps to be
taken by the States Parties . shall include those
necessary for. the prevention, treatment and
control of epidemic, endemic, occupational and
other diseases.
The right to nondiscrimination A former drug user is denied work, driver’s license
and child custody because of medical history.
ICCPR 26: All persons are equal before the law and
are entitled without any discrimination to the equal
protection of the law.
Those with a history of drug use are denied ARV.
Adapted from: OSI and Equitas. Health and Human Rights: A Resource Guide. New York, NY: Open Society Institute; 2007.
ICCPR, International Covenant on Civil and Political Rights
78
; ICESCR, International Covenant on Economic, Social, and Cultural Rights.
75
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justice programs need evaluation, particularly regarding their
effects on HIV acquisition and progression, HIV treatment,
and treatment for drug dependence.
Reforming laws that authorize police surveillance and
pretrial detention of drug users, particularly laws that criminalize
so-called ‘internal possession’ or positive urine tests and the
possession of sterile injection paraphernalia, will likely be
among the most powerful levers for structural reduction of HIV
risk. UN Secretary General Ban Ki Moon has highlighted the
need for removal of criminal penalties on people who use drugs
and other groups vulnerable to HIV.
90
The Executive Director of
the Global Fund to Fight AIDS, Tuberculosis, and Malaria, an
HIV researcher and physician with over 500 peer-reviewed
publications, has called for removal of penalties for personal
drug possession.
91
Portugal decriminalized possession of all
drugs in 2001 and has subsequently reported increases in
numbers of persons seeking drug-dependence treatment,
decreases in HIV related to drug use and decreases in heroin
use and heroin-related deaths.
92
Its experiences demonstrate the
importance of examining the public health effects of drug
penalty reform. Studies are also needed of other law reforms,
including those related to prostitution, sodomy, and intentional
HIV transmission, to understand their impacts on access and use
of health services and on the incidence and prevalence of
HIV/AIDS and other infectious diseases.
CONCLUSIONS
The Joint United Nations Program on HIV/AIDS
(UNAIDS) has proposed a package of interventions to remove
legal and policy impediments to effective HIV prevention
policies, including legal aid and empowerment for populations
at risk, legal reforms, ‘know your rights’ campaigns, training
for service providers, programs to reduce violence against
women and girls, and programs to reduce stigma and
discrimination.
93
A 2009 UNAIDS survey of 56 countries,
however, reveals the challenge of moving from rhetorical
commitments to implementation of programs that safeguard
human rights. Although 85% of national strategic plans on
AIDS mentioned stigma and discrimination or human rights
concerns, few included specifics: nearly 7 in 10 made no
mention of populations at risk, including IDU, sex workers, or
men who have sex with men, or any programs to address
human rights violations against them.
93
Given the scale of police abuses against and detention of
IDU, national commitments to universal access to HIV
prevention and treatment must recognize that drug users do
not forfeit their entitlement to health services or human
dignity. ‘Combination prevention’ for HIV—frequently cited
as the best hope for containing the spread of HIV
94,95
—must
be reconceptualized for criminalized populations to include
such measures as legal aid, access to justice, and protection
against police abuses. Without protection of these basic human
rights, universal access for IDU is unlikely to change from
a utopian ideal to anything approaching an achievable reality.
ACKNOWLEDGMENTS
Special thanks to Joanne Csete, Thomas Kerr and his
colleagues at the British Columbia Center for Excellence in
Vancouver, and to Johna Hoey at the Open Society Foundations
Public Health Program. Additional thanks to the National
Institute on Drug Abuse (NIDA) of the National Institutes of
Health, and to the International AIDS Society, for sponsoring
a meeting on the Prevention and Treatment of HIV/AIDS among
Drug Using Populations: A Global Perspective, in January
2010. Portions of this article were presented there, and
benefitted from the insights of those in attendance.
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    • "In a similar fashion, another study [44] suggests that CBPR can be a valuable tool for determining the immediate concerns of prisoners, such as the receipt of highquality and dignified health care inside and outside Barratt et al. [34] Confidentiality and safety concerns, in particular due to criminalization of drug use. Draus et al. [27] Wolfe and Cohen [37] Singer et al. [36] Barratt et al. [34] Mistrust of experiments; fears of exploitation and objectification at the hands of investigators. Fisher et al. [25] NAOMI and Boyd [4] Singer et al. [36] Stigma related to HIV/AIDS or drug use; fear of family or community rejection; misconceptions and stereotypes about drug users. "
    [Show abstract] [Hide abstract] ABSTRACT: Background: Drug user networks and community-based organizations advocate for greater, meaningful involvement of people with lived experience of drug use in research, programs and services, and policy initiatives. Community-based approaches to research provide an opportunity to engage people who use drugs in all stages of the research process. Conducting community-based participatory research (CBPR) with people who use drugs has its own ethical challenges that are not necessarily acknowledged or supported by institutional ethics review boards. We conducted a scoping review to identify ethical issues in CBPR with people who use drugs that were documented in peer-reviewed and grey literature. Methods: The search strategy focused on three areas; community-based research, ethical issues, and drug use. Searches of five academic databases were conducted in addition to a grey literature search, hand-searching, and consultation with organizational partners and key stakeholders. Peer reviewed literature and community reports published in English between 1985 and 2013 were included, with initial screening conducted by two reviewers. Results: The search strategy produced a total of 874 references. Twenty-five references met the inclusion criteria and were included in our thematic analysis. Five areas were identified as important to the ethics of CBPR with people who use drugs: 1) participant compensation, 2) drug user perspectives on CBPR, 3) peer recruitment and representation in CBPR, 4) capacity building, and 5) participation and inclusion in CBPR. Conclusions: We critically discuss implications of the emerging research in this field and provide suggestions for future research and practice.
    Full-text · Article · Dec 2016
    • "As a result, when conducting international and/or cross-cultural research, it is important for the researcher to determine how the participant population defines and values privacy, and then design confidentiality procedures to reflect these values (Fisher, 2013). In localities affected by war, or in which vulnerable populations such as gay and lesbian individuals or drug users are subject to imprisonment, investigators must ensure that their recruitment procedures do not identify individuals in ways that place them at risk of violence or incarceration (Wolfe and Cohen, 2010). "
    [Show abstract] [Hide abstract] ABSTRACT: Since the adoption of The Nuremberg Code (1949) following Nazi medical experimentation in World War II, the ethical issues involved in research have been identified and are constantly developing and evolving. This article begins by providing a history of international research ethics regulations and guidelines and their development. It then provides a brief overview of research ethics issues such as ethics review procedures, and issues related to conflicts of interest. The article then explains and provides examples of mechanisms for the application of the three primary ethical principles involved in research ethics: respect for persons, beneficence, and justice. We conclude with a discussion of research ethics in an international and cross-cultural context.
    Article · Dec 2015 · Journal of the International AIDS Society
    • "Currently, more than 50% of new HIV infections occur among five key populations (MSMs, SWs, individuals in prisons or other closed settings, transgender people, and IDUs) that are frequently marginalized and criminalized [55]. The development of policies and programmes to facilitate access to an HIV cure must include participation from at-risk populations and the realization of calls Á by UNAIDS, the WHO and others Á to decriminalize homosexual sex, sex work and individual drug use and possession [56,57]. Increasing access to a cure for populations in closed settings may require both improved healthcare in these settings and criminal justice reform [58]. "
    [Show abstract] [Hide abstract] ABSTRACT: Introduction: The scale of the HIV pandemic - and the stigma, discrimination and violence that surrounded its sudden emergence - catalyzed a public health response that expanded human rights in principle and practice. In the absence of effective treatment, human rights activists initially sought to protect individuals at high risk of HIV infection. With advances in antiretroviral therapy, activists expanded their efforts under international law, advocating under the human right to health for individual access to treatment. Discussion: As a clinical cure comes within reach, human rights obligations will continue to play a key role in political and programmatic decision-making. Building upon the evolving development and implementation of the human right to health in the global response to HIV, we outline a human rights research agenda to prepare for HIV cure access, investigating the role of human rights law in framing 1) resource allocation, 2) international obligations, 3) intellectual property and 4) freedom from coercion. Conclusions: The right to health is widely recognized as central to governmental, intergovernmental and non-governmental responses to the pandemic and critical both to addressing vulnerability to infection and to ensuring universal access to HIV prevention, treatment, care and support. While the advent of an HIV cure will raise new obligations for policymakers in implementing the right to health, the resolution of past debates surrounding HIV prevention and treatment may inform claims for universal access.
    Full-text · Article · Nov 2015
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