Pregnant Women Living with HIV/AIDS:

BRIEFING PAPER
Pregnant Women Living with HIV/AIDS:
Protecting Human Rights in Programs to Prevent
Mother-to-Child1 Transmission of HIV
As governments around the world respond to the AIDS pandemic, pregnant women are
increasingly at the center of global prevention efforts. The availability of medications that
can block the transmission of HIV during pregnancy, childbirth and the postnatal period
has created new opportunities to slow the spread of the virus. Governments have begun
establishing programs to facilitate access to these medications for pregnant women.2 These
initiatives, known as Prevention of Mother-to-Child Transmission (PMTCT) programs,
enable pregnant women to reduce significantly the chances that their infants will be born
with HIV.
While the benefits of PMTCT programs are immense—for individual women, their chil-
dren,3 and societies alike—it is crucial that governments implement them with a keen
awareness of the experiences of all women living with HIV/AIDS and with respect for
their human rights. PMTCT programs are primarily conceived as prevention programs
for infants. This focus on prevention leaves the concerns of women living with HIV/AIDS
largely invisible. In any health-care setting in which women are under the care of providers,
however, women receiving treatment have rights as patients. Ultimately, an approach that
respects the human rights of women will ensure that their infants and families are better
served.
This briefing paper addresses the fundamental human rights standards that governments
must uphold in creating PMTCT programs. These standards include requirements of
informed consent, provider-patient confidentiality, and health-care access without discrimi-
nation. The briefing paper concludes with recommendations for government action to
ensure that women are treated with dignity and respect through every phase of HIV/AIDS
prevention, treatment, and care. If PMTCT programs fail to protect the rights of the
women involved, not only will they reinforce women’s marginalization, but they will ulti-
mately prove ineffective.

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Pregnant Women Living with HIV/AIDS
HIV/AIDS and its Toll on Women
Heterosexual women are the group showing the greatest increases in prevalence of
HIV/AIDS. UNAIDS estimates that, in sub-Saharan Africa, women are more likely—at
least 1.3 times—to be infected with HIV than men. Among younger age-groups, such
as those aged 15–24 years, women are three times as likely to be infected as men. In
Eastern Europe, rates of infection are rising among women: In Russia, the country in
the region hardest hit by the pandemic, 38% of the newly diagnosed HIV cases in 2003
were among women, compared with 24% in 2001. Asia is also seeing increases in the
number of women living with HIV/AIDS, with HIV transmission between spouses becom-
ing a more prominent mode of transmission than in the past. In the United States,
African-American women account for an increasing share of new infections, and AIDS
has become one of the three leading causes of death among African-American women
aged 35–44.
Source: UNAIDS & WHO, AIDS EPIDEMIC UPDATE DECEMBER 2004 7–9 (2004),
available at http://www.unaids.org/wad2004/report.html.
I. Background
A. DISCRIMINATION AGAINST WOMEN AND HIV/AIDS
Commentators have long pointed to the nexus between HIV/AIDS and gender discrimi-
nation.4 Women are physiologically more susceptible than men to HIV infection through
unprotected vaginal intercourse,5 and the vast majority of women living with HIV are
infected in this way. Women’s physiological vulnerability to HIV infection is compound-
ed by pervasive sexual and domestic violence, and by women’s entrenched social and
economic inequality within their marriages and intimate relationships.6 HIV transmis-
sion between spouses is becoming more prevalent and there are indications that married
women have a higher risk of infection than unmarried women. For example, adolescent
brides in some African countries are being infected with HIV at a higher rate than their
sexually active unmarried counterparts.7
Women have also suffered disproportionately from discrimination against people living
with HIV/AIDS. The pandemic has led to increased gender-based violence as HIV-posi-
tive women are assaulted, prevented from having children, dismissed from employment,
disowned, shunned by their families and communities, and sometimes even killed.8
Women are more likely than men to be held responsible for spreading the disease and to
be labeled as promiscuous.9 Fearing violence, stigma, and ostracism, many women avoid
taking HIV tests, thereby denying themselves crucial information about their health and
excluding themselves from programs to prevent HIV transmission to their newborns.10
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Protecting Human Rights in Programs to Prevent Mother-to-Child Transmission of HIV
B. PREVENTION OF MOTHER-TO-CHILD TRANSMISSION OF HIV (PMTCT)
“When I was found [to be HIV] positive, no one talked to me about my well-being.
The doctor told me to do MTP [medical termination of pregnancy] as I had no right
to pass on the infection to my baby.”
Woman in Mumbai, India, from PANOS & UNICEF, Stigma, HIV/AIDS and
Prevention of Mother-to-Child Transmission (unnumbered page) (2001)
available at http://www.ohchr.org/english/issues/hiv/introhiv.htm.
PMTCT programs are an effort to reduce the rate of transmission of HIV from a woman
to her fetus or newborn during pregnancy, delivery, or the postpartum period. Across
the globe, approximately 2.2 million children are currently living with HIV.11 The
major cause of HIV/AIDS among children is transmission of HIV during pregnancy,
delivery, and breast-feeding.12 Infant and child mortality has noticeably increased in
many sub-Saharan countries due to HIV infection—both as a direct result of vertical
transmission (which increases child morbidity), and as a consequence of the general
impact of HIV-related deaths on the health-care delivery system.13
In the absence of treatment, an infant’s risk of acquiring HIV from a mother living
with HIV/AIDS ranges from 15% to 30% among women who do not breast-feed their
infants.14 The risk of transmission increases when a woman has a higher viral load
(e.g., she is newly infected with HIV or is at an advanced stage of the disease), or if
an infant is directly exposed to the mother’s infected body fluids during birth.15 If an
infant born to an HIV-positive mother does not contract the virus during pregnancy or
childbirth, studies estimate that the child has a 5–20% chance of acquiring the virus
from the mother’s milk if he or she is breastfed.16
PMTCT programs have been scaled up as quickly as possible to prevent the tragedy
of children contracting HIV from their mothers, either in utero, during childbirth, or
through breast-feeding. PMTCT programs attempt to prevent transmission of HIV
through the following strategies:
a) preventing HIV infection among all people, particularly among women of
childbearing age (through promoting HIV/AIDS education, expanding condom
access, and improving women’s status);
b) preventing unwanted pregnancies among HIV-positive women (through family
planning and improved reproductive health services); and
c) reducing the transmission of HIV during pregnancy, childbirth, and the
postpartum period (via the provision of antiretrovirals, safe delivery practices
such as cesarean sections, and support and counseling on infant-feeding
methods).17
The third strategy is the most common approach used by programs that speci?cally
focus on pregnant women living with HIV/AIDS.

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Pregnant Women Living with HIV/AIDS
Since 1994, clinical trials in several countries have shown that the transmission rate
of HIV can be drastically reduced through the administration of a short course of the
drug zidovudine to pregnant women and their infants. More recently, a 1999 study in
Uganda showed that nevirapine could also be used to decrease mother-to-child trans-
mission, and that it is similar in effectiveness to zidovudine.18 The potential for the
reduction of mother-to-child transmission is considerable: Antiretroviral prophylaxis
around the time of delivery, for example, can reduce transmission two-fold in breast-
feeding populations.19 With the adoption of these antiretroviral treatments, mother-
to-child transmission rates have declined in the United States and other industrialized
countries to 2%.20

Many countries are currently implementing PMTCT pilot projects or programs.
Recent international initiatives have increased the number of PMTCT programs in
the Eastern and Southern parts of Africa and have established additional programs
in the Caribbean, parts of Western and Central Africa, parts of Eastern Europe, and
parts of Central and Southeast Asia.21 However, many countries still do not have
PMTCT programs, and those that do have experienced difficulty in increasing access
to PMTCT services.22 For example, 34% of HIV-positive pregnant women in Botswana
get PMTCT treatment—a statistic on the higher end—while only 0.1% of HIV-posi-
tive pregnant women in Guyana do.23 Only an estimated 1% of HIV-positive preg-
nant women in countries heavily affected by the HIV/AIDS pandemic have access to
PMTCT services.24
II. PMTCT Programs and Women’s Human Rights
“Where individuals and communities are able to realize their rights—to
education, free association, information and, most importantly, non-
discrimination—the personal and societal impact of HIV and AIDS are reduced.
…The protection and promotion of human rights are therefore essential in
preventing the spread of HIV and to mitigating the social and economic impact of
the pandemic.”
Of?ce of the United Nations High Commissioner for Human Rights, HIV/AIDS and Human
Rights at http://www.ohchr.org/english/issues/hiv/introhiv.htm (last visited July 28, 2005).
PMTCT programs implicate certain fundamental human rights regarding liberty,
security of person, privacy, health, and freedom from discrimination.25 These rights
are undermined where women are denied the opportunity to give informed consent to
HIV testing and treatment, where their confidentiality is not respected, and where their
involvement in PMTCT programs serves to reinforce discrimination and stigma associ-
ated with HIV/AIDS.
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Protecting Human Rights in Programs to Prevent Mother-to-Child Transmission of HIV
A. INFORMED CONSENT
“The people in charge of the program [to prevent mother-to-child transmission]
tell us not to give all the information [because they say it might confuse women].
Maybe 2% [of the women] are given all the information. In fact, the other day
there was a [pregnant] woman who said to me ‘For my child, I will do anything.
But they have to give me all the information.’ ”
Human Rights Watch interview with HIV/AIDS counselor [name withheld] at a public
hospital, Santiago, Dominican Republic, January 19, 2004, Human Rights Watch, A Test of
Inequality: Discrimination against Women Living with HIV in the Dominican Republic
30 (2004) available at http://hrw.org/reports/2004/dr0704/dr0704.pdf (last visited June 16, 2005).
Respect for an individual’s right to give informed consent derives from the concept of
physical integrity, which is formally protected in guarantees of the rights to security
of the person,26 liberty,27 privacy,28 and health.29 Women’s right to physical integrity
requires that their decisions regarding health interventions—HIV testing and treatment
among them—be respected. And to make appropriate decisions about their health,
women must have access to reliable information about the proposed treatment or test-
ing protocol.
In its resolution on the rights of persons with mental illness, the United Nations
General Assembly defines informed consent as consent to a medical intervention that
is “obtained freely, without threats or improper inducements.”30 Before giving consent,
a patient must be provided with “adequate and understandable information in a form
and language understood by the patient” on matters such as the purpose of the treat-
ment, alternative treatments and “possible pain or discomfort, risks and side-effects of
the proposed treatment.”31 Further, the United Nations Committee on the Elimination
of Discrimination against Women discusses the right to informed consent in connec-
tion with article 12, the article on health, in the Convention on the Elimination of All
Forms of Discrimination against Women. The committee expresses this right as fol-
lows:
“Women have the right to be fully informed, by properly trained personnel, of
their options in agreeing to treatment or research, including likely bene?ts and
potential adverse effects of proposed procedures and available alternatives.”32
Informed consent must be guaranteed prior to testing and treatment for HIV/AIDS.
Counseling should be part of every woman’s decision to learn her HIV status and par-
ticipate in PMTCT programs.

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Pregnant Women Living with HIV/AIDS
1. TESTING AND INFORMED CONSENT
“If [a woman] finds herself HIV-positive, she is signing three deaths: psychologi-
cal death, social death, and later physical death. Don’t you think that is a lot?”
Woman in Koudougou, Burkina Faso, from PANOS & UNICEF, Stigma, HIV/AIDS
and Prevention of Mother-to-Child Transmission (unnumbered page) (2001)
available at http://www.ohchr.org/english/issues/hiv/introhiv.htm.
As programs to prevent mother-to-child transmission of HIV become increasingly
available, there is a strong incentive to raise enrollment in those programs by scaling
up HIV testing of pregnant women.
Expanding women’s access to HIV test-
UNAIDS and WHO define four different types of testing and categorize
ing during pregnancy is a necessary
them by whether the testing is initiated by the client (voluntary testing) or
component of any campaign to prevent
the provider (diagnostic testing, routine offer of testing to all clients, and
mother-to-child transmission. It is cru-
mandatory testing).
cial, however, that efforts to increase
testing be complemented by similar
• Voluntary testing refers to testing at the patient’s request.
commitments to pretest counseling.
• Diagnostic testing refers to testing that is indicated whenever
Governments should not lose sight of
a patient show signs or symptoms consistent with HIV-related
each woman’s right to make informed
diseases or AIDS.
• Routine offer of testing refers to testing that is offered
decisions about her health care, includ-
whenever a patient is being assessed for sexually
ing her decision to learn her HIV sta-
transmissible infections, when a pregnant patient is seen in
tus. Where women are forced to take
the context of enrollment in a PMTCT program, or a patient
an HIV test or are tested without their
is seen in a health-care setting where HIV is prevalent and
knowledge and informed consent, their
antiretroviral treatment is available.
basic human rights are severely com-
• Mandatory testing refers to testing that is compulsory.
promised.
UNAIDS and WHO discuss mandatory testing only for testing
blood to be used for transfusions or the manufacture of
Compulsory HIV testing, the most
blood products, and in rare circumstances where a patient is
obvious threat to the right to informed
unconscious, where his or her guardian or parent is absent,
consent, “can constitute a deprivation
and HIV-status is needed for optimal treatment.
of liberty and a violation of the right
Source: UNAIDS & WHO, Policy Statement on HIV Testing (2004), available at
to security of person,” according to the
http://www.unaids.org/html/pub/una-docs/hivtestingpolicy_en_pdf.htm.
International Guidelines on HIV/AIDS
and Human Rights, promulgated to
help states translate human rights prin-
ciples into concrete practices in the
context of HIV/AIDS.33 The guide-
lines warn that “there is no public health justification for such compulsory HIV testing”
as “[r]espect for the right to physical integrity requires that testing be voluntary and that
no testing be carried out without informed consent.”34 UNAIDS further maintains that
testing can be conducted only with informed consent—consent that is both informed
and voluntary.35
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Protecting Human Rights in Programs to Prevent Mother-to-Child Transmission of HIV
Even where not compulsory, routine provider-initiated testing, which has been
increasingly supported as a means to ensure higher rates of testing among pregnant
women,36 may threaten women’s right to give informed consent. Though UNAIDS and
WHO maintain that “for provider-initiated testing…patients retain the right to refuse
testing, i.e., to ‘opt-out’ of a systematic offer of testing,” many physicians erroneously
believe that provider-initiated testing, specifically routine testing, does not require them
to seek informed consent.37 Similarly, many women—particularly those who are young
or who lack financial resources and access to education—may not understand that
they have a right to refuse testing.38 Full consent is called into even greater question
when the first time women are offered testing is during labor and delivery, as happens
in many countries to women who do not receive prenatal care.39 The stress and pain
of childbirth can make it difficult for any woman to consider fully the implications
and potential consequences of HIV testing. In these ways, “opt-out” testing becomes
indistinguishable from mandatory testing, as women are routinely tested without their
full knowledge or consent. Characterizing a medical test as “routine” does not affect
health professionals’ obligation to seek informed consent from the women who are
being tested.40
In the Dominican Republic, women’s human rights are regularly violated when
it comes to HIV testing and treatment, according to a report from Human Rights
Watch. Several women reported that doctors and other health-care professionals
required HIV tests as a condition for receiving services. In public facilities offering
prenatal care, women received little or no counseling prior to being tested for HIV.
Source: HUMAN RIGHTS WATCH, A TEST OF INEQUALITY: DISCRIMINATION AGAINST WOMEN LIVING WITH HIV IN THE
DOMINICAN REPUBLIC 29 (2004) available at http://hrw.org/reports/2004/dr0704/dr0704.pdf.
If provider-initiated testing of women seeking prenatal care is to become the norm, it
must be coupled with comprehensive measures to ensure that HIV-positive women
and girls have the opportunity to give informed consent. First, testing protocols must
ensure that the offer to test is prefaced with an offer of pretest counseling. Once a
patient has agreed to be counseled, she should be informed of the bene?ts of HIV
testing, the right to refuse testing, the availability of follow-up services, and, in the
case of a positive test result, the implications of that result for the patient’s partner or
family.41 Following counseling, providers must ensure that the patient has suf?cient
time to consider whether or not to undergo testing. Under no circumstance should the
provision of prenatal care be conditioned on HIV testing. Once the patient has given a
clear indication that she consents to be tested, the screening can take place. Providers
should make referrals for posttest counseling on HIV prevention and, for those who test
positive, for medical and psychosocial support.42

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Pregnant Women Living with HIV/AIDS
Governments that embrace provider-initiated testing should not abandon efforts
to promote patient-initiated voluntary counseling and testing models. In addition,
provider-initiated testing should not be reserved for pregnant women only. Where HIV
infection carries stigma and there is resistance to testing in the general population,
targeting pregnant women for testing may only marginalize them further, while their
partners may refuse testing themselves. As UNAIDS and WHO recommend, all patients
in a setting where HIV is prevalent and antiretroviral treatments are available should be
offered HIV testing and counseling.43
2. TREATMENT AND INFORMED CONSENT
PMTCT programs must provide pregnant women with the opportunity to decide freely
whether to accept antiretroviral therapy. The standard for informed consent to PMTCT
treatment must abide by the general standard for consent as laid out above—i.e.,
informed consent is consent to a medical intervention that is “obtained freely, without
threats or improper inducements.”44 PMTCT programs, as their name indicates, focus
on prevention. As a result, the fact that HIV-positive women are patients receiving a
health service is frequently overlooked. These programs must not disregard their duty of
care to the woman being treated, as well as the rights of these women as patients. In all
cases, adequate counseling must be a precondition to women’s participation in PMTCT
programs.
To ensure an informed decision, women must be counseled on the risks and bene?ts
of taking antiretroviral medication, both for themselves as patients and for their fetuses
and infants. They must also receive information on the risks and bene?ts of alternatives
to breast-feeding, as well as the likelihood of transmission of HIV to their fetus or
newborn, both with treatment and in the absence of treatment. Furthermore, women
must be informed of the fact that although drug therapy may reduce the risk of vertical
transmission, it does not eliminate that risk.45 This information is important because it
allows pregnant women to have realistic expectations of how they (and their fetus) might
bene?t from drug therapy.
Informed consent to undergoing antiretroviral therapy to reduce mother-to-child
transmission is also important because the treatment may affect the health of the
pregnant woman. The long-term side effects of temporary exposure to nevirapine or
zidovudine must be further researched, as previous studies have shown that there is
a small chance of resistance to these drugs—especially after their use during more
than one pregnancy. Researchers state that the risks of antiretroviral treatments are
outweighed by their bene?ts in preventing mother-to-child transmission of HIV.46
However, pregnant women must be fully informed of the medical uncertainties and
potential risks involved. Recent news articles have revived this debate with reports that
even one dose of nevirapine during pregnancy can cause resistance, thus undermining
efforts to treat HIV-positive women with the drug after childbirth.47 It is clear that the
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Protecting Human Rights in Programs to Prevent Mother-to-Child Transmission of HIV
full implications of administering drugs to pregnant women to reduce transmission of HIV
are not yet known.
Finally, pregnant women should be aware that their access to medication may be dependent
upon their participation in a PMTCT program. As presently conceived, most PMTCT
programs are aimed solely at protecting the health of fetuses and newborns,48 rather than
treating women living with HIV/AIDS. It is important that pregnant women understand,
through counseling, that access to antiretrovirals may end shortly after they have given birth.
As noted by UNAIDS:
“The fact that antiretrovirals can serve two separate purposes—as [a] vaccine for
infants against MTCT [mother-to-child transmission] of HIV, and as treatment for
HIV infected individuals—is, of course, very significant. But the issue of antiretro-
viral treatment for infected people must be considered separately from the issue of
antiretroviral drugs used for the prevention of MTCT. It requires debate and policy
decisions outside the scope of MTCT policy-making.”49
Each woman has the right to understand the advantages and risks of getting tested and
enrolling in a PMTCT program, and the decision to be tested and enroll should be her
decision alone. A woman who refuses to be tested for HIV or participate in a PMTCT
program should not be subjected to punitive action or denial of care,50 as happened, for
example, to an HIV-positive woman in the United States who had her parental rights
suspended when she insisted on breast-feeding her child.51
B. CONFIDENTIALITY OF CARE
“When the patient comes to our ward, it’s written on the file ‘HIV’ in big
letters. Anybody can see it. It’s kept next to the patient. Anybody can
see it.”
Ward-boy working in a private hospital in Mumbai, India, UNAIDS, HIV and
AIDS-Related Stigmatization, Discrimination and Denial: Forms, Contexts and
Determinants, Research Studies from Uganda and India 24 (2000) available at
http://www.unaids.org/html/pub/publications/irc-pub01/jc316-uganda-india_en_pdf.pdf.
Privacy and confidentiality guarantees are essential for PMTCT programs to effectively
protect and promote women’s human rights. For many women, the fear of disclosure of
their HIV status prevents them from seeking health services. The stigma attached to HIV
can lead to severe consequences for women, such as abandonment by partners, rejection by
other family members, blame for bringing the disease into the family, eviction, loss of eco-
nomic support, physical and emotional abuse, and other forms of discrimination.52
The right to privacy is upheld in many international legal instruments, including the
International Covenant on Civil and Political Rights.53 In the context of health status and
HIV/AIDS, the Programme of Action of the International Conference on Population and

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Pregnant Women Living with HIV/AIDS
Development states that governments should “ensure that the individual rights and the
con?dentiality of persons infected with HIV are respected.”54 The International Guidelines
on HIV/AIDS and Human Rights call on states to enact general con?dentiality and privacy
laws, ensuring that HIV-related information is protected.55
Health-care providers play an essential role in protecting patients’ privacy. The Ethical
Committee of the International Federation of Gynecology and Obstetrics (FIGO) states that
physicians have an obligation to “respect and guard the individual patient’s right to privacy
and the con?dentiality of their health information. This includes avoiding the casual sharing
of any information about individual patients in any setting.”56
In Ukraine, when pregnant women were found to be HIV-positive during routine prenatal
blood tests, many reported that nurses would disclose their status to other members of their
community.57 As a result, many women would be subjected to abuse, rejection, and aban-
donment, and a number were forced to leave their homes.58 Similarly, it has been reported
in Mumbai, India that health-care workers, when they learn that a woman has tested posi-
tive for HIV, insist on disclosing this information to the woman’s husband in the belief that
the woman herself will not understand.59 The information is sometimes shared with other
family members, as well.60
Breaches of confidentiality may also be indirect. FIGO notes that “the title of a clinic or
institution may inadvertently breach a patient’s right to confidentiality.”61 A woman who
has to go to a specially designated facility to access PMTCT services may reveal her HIV
status to the community. PMTCT programs that stand apart and label themselves as such,
without being integrated into routine reproductive health-care programs, can breach a
woman’s right to privacy. Similarly, where breast-feeding is the norm, a woman who is
seen bottle-feeding her infant in a hospital setting may be assumed to be participating in a
PMTCT program.62
Not only do breaches of confidentiality violate women’s human rights, but there are strong
public health arguments for securing confidentiality. The possibility that a person’s HIV
status may be made public without an individual’s consent will seriously discourage people
from obtaining a test or the necessary treatment. In the Dominican Republic for example,
a woman chose not to undergo an operation to remove an ovarian cyst because the opera-
tion required an HIV test.63 She feared the consequences of testing positive and of having
the results leaked to her family. Jeopardizing her health to avoid disclosure, she refused the
test and the operation. A year after her diagnosis, she still had not had the cyst removed.64

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