July 13, 2004

V. Women's Rights Violations in the Health Care System

The public health care system in the Dominican Republic does not adequately protect the human rights of women living with HIV or AIDS or women who attend prenatal health care generally.Women interviewed by Human Rights Watch described three particularly persistent violations: inadequate HIV counseling, which prevents women from being able to exercise their right to informed consent on issues of testing and treatment; routine unauthorized release of confidential HIV test results; and decisions by doctors to carry out, postpone, or withhold medical procedures without properly informing the woman or obtaining her prior consent. These different types of abuse constitute human rights violations in and of themselves.In a context of severe sex inequality and social subordination of women, they exacerbate each other as well as the stigma and discrimination faced by women living with HIV.

Women told us they were tested for HIV when they received health care services unrelated to HIV or AIDS, despite the fact that domestic law prohibits this practice.[110]Several women told Human Rights Watch that doctors and other health care professionals demanded HIV test results before administering services. Women who were tested for HIV when they used government prenatal care often received little or no counseling, in violation of domestic norms and international guidelines.Women we interviewed told us that doctors and other health professionals released their HIV test results to spouses, family members, neighbors, friends, or others, without their knowledge or authorization.Human Rights Watch also spoke to a number of HIV-positive women who said they had been sterilized because of their HIV status without receiving full information about their rights and choices, and thus without their informed consent.The case of Isabel Guzmn, briefly recounted below, illustrates many of these violations.

Guzmn, a shy twenty-one-year-old, came to the interview with Human Rights Watch with her two-month-old son and seemed surprised that anyone would take an interest in her life.Guzmn had married a twenty-seven-year-old man when she was fifteen.She has one son from this marriage.The headmaster of the public school she attended at the time told her that married women were allowed to attend classes only on Sundays, and she consequently never graduated from high school.[111]Her husband died, she believes from AIDS, some years ago.She then married another man, who physically abused her on a regular basis:"He hit me many times. Almost every week."However, she was not able to ask for condom use because "my husband thinks I have another man."[112]The attacks continued even after she learned she was pregnant again:"He attacked my stomach when I was pregnant, my face, my back, with his fists."

Guzmn found out that she was HIV-positive during this second pregnancy when doctors at the public hospital tested her as part of prenatal routine care, without counseling and without obtaining her consent.The doctors informed Guzmn that she would have to have a cesarean section to avoid transmitting the virus to her child.She reported, however, that her doctors then began delaying and refused to see her until she was nine centimeters dilated, too late for a cesarean section.She explained what happened when she gave birth:

[Because I was HIV positive] I had to clean myself alone.They did not clean the baby.My mother cleaned him. One nurse did not want to inject me.She told my mother she did not want to [because I was HIV-positive]. [113]

When we talked to Guzmn in January 2004 she had recently separated from her second husband, and was struggling to make ends meet for herself and her two children.

Inadequate HIV Counseling and Testing without Informed Consent

The people in charge of the program [to prevent parent-to-child HIV transmission] tell us not to give all the information [because they say it might confuse women].Maybe 2 percent [of the women] are given all 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."
-HIV/AIDS counselor[114]

Many women told Human Rights Watch that they were tested for HIV as part of prenatal care without any counseling at all, or that pre- or post-test counseling was insufficient to allow them to make informed choices about HIV testing and subsequent treatment or procedures, as required by international law and generally accepted medical ethics.[115]Several women also told Human Rights Watch that doctors and other health care professionals demanded HIV test results before administering health care services unrelated to HIV or AIDS, despite the fact that domestic law prohibits this practice.[116]

The lack of adequate-in many cases, any-pre- and post-test counseling may be one of the greatest shortcomings of the Dominican Republic's program to reduce the risk of parent-to-child HIV transmission as currently implemented.[117]In 2003, an estimated 31 percent of the women who attended public prenatal health services were given pre-test counseling, though 50 percent of all women were tested for HIV.[118]This means that over 28,000 women were tested in 2003 without any form of formal pre-test counseling.[119]

Catarina Torres, twenty-five years old, was tested at a public hospital in Santo Domingo when she was seven months pregnant in 2002.Medical personnel informed her that she would be tested for HIV, but she did not receive counseling and was not asked for her consent.[120]Gabriela Lpez, twenty-four years old, told Human Rights Watch that she had been tested for HIV during a prenatal health care visit at the public hospital in La Romana in 2003 without any pre-test counseling and without medical personnel informing her of her HIV status.She later received post-test counseling, though only because medical personnel at the public hospital referred her for further prenatal care to a private clinic with an internationally funded program to prevent parent-to-child HIV transmission: "They sent me to the private clinic [without giving me a reason].That's where they [finally] told me that I was HIV-positive."[121]

Women who are hospitalized for childbirth without prior prenatal care often are not told that they have been tested for HIV until after childbirth.[122]For example, Dominga Garca, twenty-six years old, was tested for HIV immediately before childbirth at a public hospital in San Pedro de Macors in 2003.When she arrived at the hospital, Garca's blood was drawn without her knowing why.After she gave birth, a nurse told her that she could not breastfeed her child, without any explanation.Only at this point was she sent to receive counseling, and at no point was she asked to sign a testing consent form.[123]

Some women told Human Rights Watch that they avoid even essential health services because they do not want to be tested for HIV, potentially to the serious detriment of their health.Ana Mara Varias, a forty-two-year old woman with a severely swollen lower abdomen, was diagnosed with an ovarian cyst in early 2003."They don't operate if there is no [HIV test] result," she told Human Rights Watch.She explained that she refused the test, fearing the consequences for her if she were found positive and the results were leaked to her partner and family.As a result, Varias never scheduled follow-up health care services, and consequently, almost a year after the diagnosis, had not had the cyst removed.[124]

The administration of inadequate pre- and post-HIV-test counseling constitutes a severe limitation on the human right to receive essential information on health, and substantially limits HIV prevention because such counseling is essential in helping women prevent sexual transmission.[125]According to the United Nations Committee on Economic, Social and Cultural Rights (CESCR), the right to the enjoyment of the highest attainable standard of health includes the "right to seek, receive and impart information concerning health issues"[126] and a positive obligation for states to take steps necessary for the "prevention, treatment and control of epidemic, occupational, and other diseases."[127]In order to fully implement these obligations with regard to HIV/AIDS, the U.N. Guidelines advise that "public health legislation [should] ensure, whenever possible, that pre- and post-test counseling be provided in all cases"[128] because counseling ensures the voluntary nature of HIV testing and contributes to the effectiveness of subsequent care or HIV prevention.

Our research indicates that the counseling women receive in the public health care system in the Dominican Republic is insufficient on both counts: it fails to equip women with the information necessary for them to give informed consent to testing and treatment, and it fails to give them the information they need to protect themselves from sexual transmission in the future.

This latter point is critical:the preventive potential of voluntary counseling and testing programs can be fulfilled only if women are given the information they need to make informed decisions about behaviors and treatment options.Research from Africa and the Caribbean has shown that that the voluntary counseling and testing component of HIV prevention policies is highly efficient in reducing high-risk behavior, such as unprotected intercourse.[129]This is particularly true where counseling addresses gender inequality and relationship dynamics, notably through couple counseling and combined with community education.[130]

In 2001, UNAIDS published a paper that illustrates several central issues related to voluntary HIV counseling and testing for pregnant women (UNAIDS Prenatal HIV Testing Paper), with special emphasis on the feasibility of providing such services in developing countries with high HIV prevalence.[131]The UNAIDS Prenatal HIV Testing Paper notes that pre-test counseling should include information on the potential negative reactions of families and long-term partners upon learning an individual's HIV-status.[132]These consequences potentially include ostracism, divorce and discrimination.Both the UNAIDS paper and a similar document published by the World Health Organization in 1999 discourage pressuring women into being tested for HIV-whether explicitly or implicitly by only presenting the advantages to women's knowing their HIV status-since being tested and having their HIV status known may compromise the safety and health of the women and their dependents.[133]

The analyses summarized above are particularly pertinent in the Dominican Republic, where our research indicates that unauthorized release of confidential HIV test results is common.In combination with the government's failure to address endemic violence against women, entrenched sex inequality, and a strong social bias against condom use, the issue of informed consent is particularly critical to women.The testimony of Clara Prez, twenty-eight, illustrates the consequences that can ensue when inequality in the home combines with inadequate pre-test counseling and breaches of confidentiality.

Clara Prez told Human Rights Watch that she contracted HIV from her husband, who refused to use condoms."I asked him please to wear one. He didn't want to. He was running around [i.e. having sex] with other women."She learned that she was HIV-positive when she was tested during her three-month prenatal check-up in 2002 at a public hospital in Santo Domingo; she received no pre- or post-test counseling.After struggling with the news, she decided to tell her husband she was HIV-positive, in part"to avoid rumors" because "there was a nurse who lived in the neighborhood who was talking [telling others about my HIV status]."Her husband insisted that he did not want to be tested for HIV."He said: 'No, it is a lie."Prez said that the relationship deteriorated quickly: "After I knew, the fights began-many, many fights."Prez subsequently separated from her husband and has been unable to find employment due to her HIV status.[134]

The Dominican Republic's national norms for HIV/AIDS counseling do not mention the necessity to help individuals assess and overcome potential adverse reactions-including violence-when the test results are revealed to the individual's sexual partners, as mandated by law.[135]Counselors are encouraged to evaluate whether or not it is the right time to inform an individual of his or her HIV status,[136] but not to help the individual evaluate whether it is the right time to be tested at all.In other words, the norms on counseling essentially appoint the counselor guardian of the tested person's welfare.An HIV counselor at the public hospital in Santiago told Human Rights Watch that most women, in general, did not receive full information regarding HIV testing and choices regarding available procedures.[137]

Unauthorized Release of Confidential HIV Test Results

Three months ago, I gave birth.They did a test on me, then after I gave birth they came to tell me that I could not breastfeed.The doctor said I had to bring in my husband.They told me with my husband there.They had told him [that I was HIV-positive] before they told me.
-Jessica Torres, twenty years old[138]

Human Rights Watch found that medical and other personnel at both public and private hospitals often released confidential HIV test results without the authorization or even knowledge of the tested individual.An HIV counselor at a public hospital in Santiago noted that the release of confidential HIV test results was common despite training: "It happens often that confidentiality is breached. We have given so many workshops, and still doctors think they can decide for another person."[139]Such breaches are contrary to the right to privacy.[140]For women, confidentiality of medical information, such as HIV status, is essential to the protection of their human rights generally, because women may find themselves abandoned, subject to domestic violence, or ostracized if their domestic partners, families or communities discover that they are HIV-positive.

In the context of HIV/AIDS, protection of the right to privacy is also vital to enable women to consent to HIV tests and treatment for themselves and their infants without fear of their long-term sex partners' reactions.The need for stringent confidentiality measures is exacerbated in the Dominican context where the lack of shelters for victims of domestic violence and the failure to counsel women adequately with respect to their rights and choices compound the risk of abuse when women are known to be HIV positive.Research from Africa indicates that the fear of disclosure of HIV status is one of the main barriers to women's use of voluntary counseling and testing services, and that this fear "reflect[s] the unequal and limited power that many women have to control their risk for infection."[141]The UNAIDS Prenatal HIV Testing Paper cautions that women are unlikely to want to be tested for HIV if their confidentiality is not properly guaranteed, including against sharing HIV test results among health workers.[142]

The testimonies of Rosa Polanco, thirty-four, and Dominga Cspedes, thirty, are a few among the many we collected that clearly illustrate the disastrous consequences for women of breaches of confidentiality. In the cases described below, the consequences were exacerbated by the lack of any pre- or post-test counseling that could have helped the women reduce the abuses and stigma they subsequently faced.

Polanco was tested for HIV when she was hospitalized with a liver disease."There was one doctor, very rude.He said 'What you have is AIDS, because you weren't careful' in front of my daughters."As a consequence of the disclosure of her HIV status to her family, Polanco was thrown out of her home by her mother.She moved to a makeshift wooden shack without sanitation, electricity, or running water, in a part of Santiago dubbed "the Part Behind" ("La Parte Atrs") by locals.She said:

[When I lived at home] I had to clean the bathroom whenever I used it, I had to wash my plates separately.[My mother] told me not to touch my children.She threw me out.My uncle gave me some land where I built a shack without water, without light, without a [constructed] floor. I have to do my necessities in a bucket and throw it out close by.[143]

Dominga Cspedes, thirty years old, was pregnant with her third child when health workers at a public hospital tested her for HIV without her consent and then released her HIV test results to her family without her authorization or knowledge."They didn't say they were going to [do an HIV test], they just took the blood, then they called my house and told my mother-in-law that I have HIV." Cspedes had decided to get sterilized after this third child, but was afraid to go back to the hospital for fear of further violations of her privacy.Despite knowing her HIV status, her husband did not want to use condoms, and she was unable to use any other form of contraceptive: "I tried to protect myself, but as I told you, he didn't like [condoms].He forced me.I vomited from the [contraceptive] pill."Cspedes had two more children.[144]

Human Rights Watch gathered evidence to suggest that some health workers treated women as if they were incapable of handling the information about their HIV status, thereby presumably justifying the release of confidential HIV test results.Rosa Lantigua, forty-two years old, explained that a doctor gave her HIV test result to her sister, without Lantigua's consent because "sometimes doctors don't like giving the result to the [tested] individual.They think the individual can't take [the news], so they give [the test result] to someone else."[145]Likewise, the counselor at the public hospital told Yesfanil Almonte, twenty-four years old, that they did not want to give her the results of her HIV test, and that she needed to send a friend or a family member to get them.[146]These misguided practices neither spare the feelings nor protect the human rights of women living with HIV.Moreover, when health personnel effectively appoint themselves guardians for women living with HIV, they essentially relegate these women to the position of minors, thereby reinforcing the existing culture of social control and sex inequality.

Doctors and other health personnel in other cases we documented released confidential HIV test results for no apparent reason.Maria Prez, twenty-eight years old, had not disclosed her HIV status to the friend who accompanied her to the public hospital to give birth."I had a friend, when I was hospitalized, I didn't tell him, he went to the hospital, and they said 'are you her husband?'He said yes, and they said 'they haven't given her the cesarean section yet, because she is HIV-positive.'"[147]

Alicia Lpez, twenty-three years old, had specifically told the doctor at the public hospital in Santiago that she did not want her family to know her HIV test results.She said:

[The doctor] came to give me a blood test.On my papers it said that I have HIV.He asked me if my family knew, and I said no, that they were not ready.[The next day] they gave me the medicine for the cesarean section.[148]In that time, [the doctor] went to the room and told a friend of mine [that I was HIV-positive] without my consent.Without my authorization.I found out [the day after] in the morning, because my sister told me [that my friend had later told my neighbor].My neighbor had [then] told my mother.I had told [the doctor] that the only person who knew [that I was HIV-positive] was my sister, and I did not give him my authorization [to release my test results to anyone else].[149]

In the case of Rosalia Rodrguez, twenty-seven years old, public hospital nurses "put HIV in red on my record on my bed," leaving no doubt as to her status: "All of the personnel [knew].How could they not know, with that sign?"[150]

The testimony of twenty-two-year-old Alesandra Ebrito illustrates how the release of confidential HIV test results, in combination with a general lack of protection of the rights of people living with HIV, creates a situation in which tested individuals are denied other rights, such as freedom from discrimination on the basis of HIV status in access to health care services, or stop seeking work due to a general sense of disempowerment.Ebrito already suspected that she might be HIV-positive when she went to get tested.Her husband had died some years back, and she wanted to know her HIV status."I did the test in 2003.I filled myself with courage. My gynecologist revealed [my HIV status] to the director of the factory [where I worked].I left work voluntarily because she was going to [fire me].The doctor [gynecologist] refused to treat me."[151]

Many NGO workers and health care providers expressed concern about the widespread and serious nature of breaches of HIV test confidentiality standards. Interviewees who worked as HIV/AIDS counselors in hospitals where the national program to reduce the risk of parent-to-child HIV transmission was implemented spoke of careless disclosure in hospital hallways.Rosario Almonte recalled: "When I was a counselor [in 2003] sometimes they would shout in the hallway 'there is that AIDS patient who is looking for you.'"[152]Some counselors are persons living with HIV, some are training nurses or psychologists.All are supposed to have received a short course of training organized by the Ministry of Health, covering the national norms on HIV counseling and the content of the program to prevent parent-to-child HIV transmission.[153]

Medical Procedures Withheld, Delayed , or Administered Under Pressure

They asked me if I wanted to be sterilized, and I said yes.I filled out the form.When I was in the operation room, they asked me again, and I said no.But the other doctor said "no, sterilize her once and for all, she can't have any more children."
-Jessica Fernndez, twenty-three years old[154]

Several women living with HIV in the Dominican Republic reported that medical personnnel arbitrarily withheld or postponed medical procedures because of their status or that they were unduly pressured to undergo certain medical procedures, in particular sterilization, because they were HIV-positive.The care HIV-positive women received at any given time depended on the attitudes of the particular health care personnel who attended to them or on the prevailing policy at the clinic, hospital, or department in which they happened to be seeking care.The treatment the women we spoke to received was in some cases clearly inconsistent with the right to the highest attainable standard of health without discrimination of any kind, as guaranteed by articles 2(2) and 12 of the International Covenant on Economic, Social and Cultural Rights (ICESCR).[155]To our knowledge, the Dominican state has not sanctioned medical personnel who discriminate against HIV-positive women.

Human Rights Watch interviewed NGO workers with years of experience working with women living with HIV/AIDS in the Dominican Republic who told us that doctors or nurses sometimes imposed a "decision" to sterilize women living with HIV, and that women were given inadequate or misleading information about the benefits or drawbacks of sterilization procedures.Notably, NGO workers recounted from personal experience that some women were confronted with the possibility-sometimes phrased as a "necessity"-of undergoing sterilization immediately after receiving the information about their HIV-positive status, i.e. in circumstances not conducive to independent decision-making due to the emotional stress the women were facing.[156]

Human Rights Watch interviewed a small number of women who-due to their HIV-positive status-were pressured into being sterilized, or felt they had insufficient or inadequate information about their options concerning sterilization.A doctor at the local public hospital told Juana Daz, twenty years old, during a prenatal visit that she was going to be sterilized because of her HIV status.Since Daz was eighteen years old at the time, the doctor explained that her mother's permission was necessary.The doctor did not tell her that she could refuse sterilization.After her mother signed the form, one day before the scheduled procedure, a local NGO worker told Daz that she did not need to be sterilized.At the time, Daz was afraid of the health consequences of another pregnancy, and therefore signed a consent form herself.She told Human Rights Watch she regretted this and she felt she was told too late that she had a choice.[157]If it had not been for the NGO worker who told her that it was not necessary for her to undergo sterilization, she might not have known at all.

Rebeca Prez, thirty-nine years old, had a similar experience."The sterilization was forced on me. 'You can't have any more children [because you have HIV].'I accepted because I did not know, because I was perplexed, on top of this pregnancy with HIV.I said yes, sterilize me, but without any mental presence."Prez, who worked as a nurse at a public hospital until one year earlier, noted that, in her experience, the introduction of the program to reduce the risk of parent-to-child HIV transmission had not helped this situation. "When they started the MTCT program, doctors [still] obligated women [to get sterilized].Doctors said, 'we have to sterilize them.'"[158]

There is no medical or epidemiological justification for pressuring women living with HIV into being sterilized.The benefit in terms of prevention and control of the spread of HIV is minimal.As a practical matter, the sterilization of women who are HIV positive does not prevent them from engaging in risky sexual behavior, and therefore does not prevent them from transmitting HIV to sexual partners, or from being reinfected themselves.Indeed, sterilization may further undermine a woman's power to negotiate condom use because condoms will no longer be necessary for contraceptive purposes.

Other women we met were refused access to certain medical procedures or received care with considerable delay.This was particularly true for interventions that require surgery, such as cesarean sections.[159]Rosalia Rodrguez, twenty-seven years old, was refused adequate care at a public hospital in Santo Domingo in 1999:

I gave them the test result, and they did not want to treat me. They had me go into labor, and nothing, no one attended to me. I fell on the floor, and no one caught me.The cleaning lady caught me finally.They did not even clean my baby, in the beginning they wouldn't let me see him.They brought him to me all dirty.I knew it was because of this [my HIV status].[160]

HIV-positive women whom we interviewed told us that they were made to wait for cesarean sections until all HIV-negative women have been operated upon.[161]This was the experience of Maria Bez, thirty-four years old, at the public hospital in Santiago: "Generally, at the hospital when you come with HIV, they treat you badly.Even if you come first, they give you the cesarean section last.I had to wait twenty-four hours after I had my appointment to have my cesarean section.They demanded that I buy [surgical] clothes for the doctors. [It cost me] more than 500 pesos [U.S$29][162] one year and a half ago."[163]

Guadalupe Torres, who gave birth at the same hospital, had to wait twelve hours for her cesarean section.[164]HIV/AIDS counselors and NGO workers said that this was a common practice at hospitals throughout the Dominican Republic, and that it targeted only women living with HIV.[165]Rosario Almonte, who worked as an HIV/AIDS counselor at a public hospital until last year, remarked: "They say that they carry out cesarean sections [on all HIV-positive pregnant women], but it is not true, because I had to receive some children, they did not even want to touch them. The [hospital] director says that he can't make the doctors do it."[166]Dr. Sams Faulkner, an independent medical doctor who treats women living with HIV, agreed: "I know women who have given birth in public hospitals without medicine [nevirapine] or have given birth vaginally [not by choice]. The other day, a woman came, she had given birth a month ago, and she had none of all that [referring to being offered nevirapine and cesarean section.]"[167]

A Health Ministry official acknowledged to Human Rights Watch that the program to reduce parent-to-child HIV transmission had initially struggled with problems regarding doctors refusing to carry out certain procedures.He maintained, however, that this was a thing of the past."There have been doctors who refused to do cesarean sections.We asked them to resign or accept.There was a hospital in Puerto Plata, and I had to go personally to do a cesarean section to show them it was not risky," he said.[168]

In some cases, the discriminatory care women expect and receive in the health care system discouraged them from seeking vital medical care during their pregnancy, to the potential detriment of their health and that of their child.Yolanda Pie did not return for regular prenatal checkups after she was subjected to HIV testing without consent at her three-month checkup at a public hospital in Santo Domingo in 2003."When I went back with labor pains, there was no time for a cesarean section, he [the doctor] turned his back on me [and said] 'I don't want to be infected.'When the baby was just about to fall on the floor, he caught him underneath. They did not clean me or anything.It's as if you are a dog."[169]

Government Response

The Dominican Republic is not doing nearly enough to address the pervasive women's rights violations described above.Although a large proportion of the Dominican women who are tested for HIV do not receive pre- or post-test counseling, government officials told Human Rights Watch that no specific budget was allocated to centers for voluntary HIV counseling and testing, and that most of the existing centers were directly connected to prenatal health care services and not designed to bring voluntary HIV counseling and testing services to the general population.[170]

Where counseling is given, it rarely is sufficient to allow women to make informed decisions on testing, and it does not give them the tools and information they need to prevent HIV transmission to themselves, their sex partners, and their infants.This is symptomatic of a more general failure of Dominican government authorities to take seriously the connection between entrenched sex inequality, high levels of violence against women, and the spread of HIV/AIDS.

There continues to be little or no oversight, evaluation, and sanctioning of health personnel who refuse to implement existing norms for counseling and testing and legal protections of the rights of women living with HIV.The U.N. Guidelines specifically recommend that "an independent agency should be established to redress breaches of confidentiality."[171]Such an agency does not exist in the Dominican Republic and Human Rights Watch is aware of no cases in which medical personnel have been prosecuted for such violations.[172]

The Dominican Republic has undertaken an important program to reduce parent-to-child HIV transmission and has achieved some significant initial successes.The program was conceived in 1999 and implemented in several phases.The original intent of the program was to ensure full implementation in a limited number of hospitals, followed by evaluation and adjustments in the implementation strategy, before attempting national coverage.[173]In 2002, the government declared the program national, and at present all public hospitals and clinics are required to implement it.[174]The program has filled an important gap in the government's response to the HIV/AIDS crisis in the country and has made real advances by prioritizing HIV counseling, testing, and access to short-course antiretrovirals for pregnant women.

In 2003, government figures showed that 38 percent of women who tested HIV-positive during pre-natal attention at public hospitals received nevirapine immediately before the birth of their children, up from 28 percent in 2002 and none before the implementation of the program.In 2003, 31 percent of women received pre-HIV test counseling when they attended public prenatal checkups for the first time (representing 62 percent of all tests), up from virtually none before the program was initiated.Follow-up data from two hospitals suggests that that the parent-to-child transmission rate of women enrolled in the program to reduce parent-to-child HIV transmission is down to 20 percent from 34 percent before the program's implementation, representing a 40 percent reduction in the infection rate.[175]Although there is still considerable room for improvement, these are laudable advances.

Human Rights Watch believes that one important remaining obstacle to success of the program is the government's continuing failure to address women's rights violations in the health care system in general and in the prenatal care setting in particular.As the interviews above demonstrate, such violations include gross breaches of confidentiality likely to endanger both mother and the baby once it is born, and systemic failures to provide adequate pre-test counseling to preserve women's right to informed consent.

In the design of the national program to reduce the risk of parent-to-child HIV transmission, moreover, the doctor in charge of implementing the program at each hospital is also the main evaluator of the implementation.[176]This creates a clear conflict of interest and does not allow for independent monitoring in situations where the supervisor is part of the problem.The national program to reduce the risk of parent-to-child HIV transmission has no independent complaint mechanism, other than judicial review, which only applies to situations that clearly contravene domestic law.In this manner, lesser transgressions cannot be remedied before they lead to other, more serious violations.

The government recently commenced efforts to reform the program in a manner which, given rampant confidentiality breaches and insufficient counseling, would be insufficient to remedy women's human rights violations and abuse.A draft bill pending introduction in the Dominican Congress was originally framed in language that would have made HIV testing mandatory for pregnant women.Human Rights Watch interviews with key drafters or promoters of the bill suggest that, despite the mandatory language, the intention behind the bill was to introduce HIV counseling and testing as a routine part of prenatal health care services, switching from the existing "opt-in"[177] system, in which women (on paper at least) must affirmatively consent if there is to be any testing, to an "opt-out"[178] system, in which women are routinely tested unless they say no.[179]This clarification by the bill's supporters is an important one, though the establishment of an "opt-out" testing system in a context of insufficient counseling is still cause for concern.

As this report has shown, many women in the Dominican Republic healthcare system currently are not given the information they need to make an informed decision about HIV testing and the confidentiality of their test results is not respected. The result of these abusive practices is stigma and more abuse.Absent significant improvements in the area of counseling and confidentiality, any move toward more routine "opt out" testing is likely to be accompanied by increases in such violations, to the detriment of women's rights and of effective HIV/AIDS prevention and treatment.[180]

Voluntary HIV counseling and testing is the standard set by the U.N. Guidelines and the UNAIDS Policy on HIV Testing and Counseling."[181]The U.N. Guidelines note that the right to privacy includes the state obligation "to guarantee that adequate safeguards are in place to ensure that no testing occurs without informed consent, that confidentiality is protected, particularly in health and social welfare settings, and that information on HIV status is not disclosed to third parties without the consent of the individual."[182]UNAIDS has consistently emphasized the importance of voluntariness, quality counseling, informed consent, and confidentiality in HIV testing and care, as essential parts of HIV prevention strategies.In addition, a strong presumption in favor of systems created to respect human rights exists in international human rights law, because such systems entail a higher degree of protection for people who are at risk of discrimination and abuse.The state has an obligation to justify measures that may restrict rights or that may limit the enjoyment of rights.[183]Human Rights Watch research suggests that the government urgently must implement measures that guarantee quality pre- and post-test counseling, address discriminatory barriers that limit the ability of women to prevent HIV transmission in their marriages or long-term unions, and implement and enforce a zero-tolerance policy on the unauthorized release of HIV test results.

[110] Ley 55-93 sobre SIDA [AIDS law], article 3.Article 3 of the AIDS law prohibits HIV testing "for reasons related to health service: when the test results condition the care the patient will receive."

[111] According to Irma Levasseur from the Ministry of Education, this is illegal though not uncommon: "A [married] pupil cannot be expelled [or compelled to attend school on a different schedule.] [The headmasters] know that.But the same headmasters have inadequate attitudes that lead them to make wrong decisions.We have had many problems with that."Human Rights Watch interview with Irma Levasseur, director, Department of Orientation and Psychology, Ministry of Education, January 29, 2004.

[112] Human Rights Watch interview with Isabel Guzmn, Santiago, January 17, 2004.

[113] Ibid.

[114] Human Rights Watch with [name withheld], HIV counselor at public hospital, Santiago, January 19, 2004.

[115] Rebecca Cook, Bernard M. Dickens, and Mahmoud F. Fathalla, Reproductive Health and Human Rights: Integrating Medicine, Ethics, and Law (Oxford: Clarendon Press, 2003), p. 109.Committee on Economic, Social and Cultural Rights, The right to the highest attainable standard of living (General Comments), General Comment 14, August 11, 2000, U.N. Doc. E/C.12/2000/4, para. 37 (referring to a State obligation to support people in making informed choices).

[116] Ley 55-93 sobre SIDA [AIDS law], article 3.Article 3 of the AIDS law prohibits HIV testing "for reasons related to health service: when the test results condition the care the patient will receive."

[117] The protocol of the Dominican program to prevent parent-to-child HIV transmission prescribes voluntary HIV testing of pregnant women during prenatal medical checkups, preceded and followed by counseling, antiretroviral medication (nevirapine) in a single dose to the pregnant woman immediately before birth (vaginal or cesarean section), scheduled elective cesarean section at thirty-eight weeks of gestation, antiretroviral medication (nevirapine) in a single dose to the infant within seventy-two hours of birth, and the provision of breastmilk substitute formula and bottles.If fully implemented, international research suggests that this kind of protocol has the potential to reduce the risk of parent-to-child transmission by more than 50 percent.Joint United Nations Programme on HIV/AIDS (UNAIDS), "Progress Report on the Global Response to the HIV/AIDS Epidemic, 2003," p. 64.

[118] Mara Isabel Tavarez, general coordinator, National Program for Comprehensive Care of Persons Living with HIV/AIDS, Ministry of Public Health and Social Support, "Programa Nacional de Reduccin de la Transmisin Vertical del VIH" (National Program to Reduce the Vertical Transmission of HIV), Powerpoint presentation to CENISMI, dated January 2004, on file with Human Rights Watch, slide 28.

[119] Ibid.

[120] Human Rights Watch interview with Catarina Torres, Santo Domingo, January 30, 2004.

[121] Human Rights Watch interview with Gabriela Lpez, La Romana, January 13, 2004.The MTCT program at this private clinic in La Romana receives funding from Columbia University, New York.Human Rights Watch phone interview with Elaine Abrams, deputy director, Mother-to-Child-Transmission Plus Initiative, Mailman School of Public Health, Columbia University, New York, April 14, 2004.

[122] The national program to reduce the risk of parent-to-child HIV transmission establishes that a woman whose HIV status is unknown when she arrives at a hospital and clinic for childbirth in an "emergency" can be tested for HIV without pre-test counseling and with oral consent to the testing.E-mail message from Eddy Prez-Then, deputy executive director, National Research Center on Maternal and Child Health (Centro Nacional de Investigaciones en Salud Materno-Infantil, CENISMI) to Human Rights Watch, February 27, 2004; and Secretara de Estado de Salud Pblica y Asistencia Social, Programa Nacional de Reduccin de la Transmisin Vertical del VIH/SIDA Repblica Dominicana.

[123] Human Rights Watch interview with Dominga Garca, San Pedro de Macors, January 14, 2004.

[124] Human Rights Watch interview with Ana Mara Varias, San Pedro de Macors, January 14, 2004.

[125] ICESCR, article 12.Article 12 reads: "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 to the present Covenant to achieve the full realization of this right shall include those necessary for: (a) The provision for the reduction of the stillbirth-rate and of infant mortality and for the healthy development of the child; (b) The improvement of all aspects of environmental and industrial hygiene; (c) The prevention, treatment and control of epidemic, endemic, occupational and other diseases; (d) The creation of conditions which would assure to all medical service and medical attention in the event of sickness."

[126] Committee on Economic, Social and Cultural Rights, The right to the highest attainable standard of living (General Comments), General Comment 14, August 11, 2000, U.N. Doc. E/C.12/2000/4, para. 12(b)(iv).

[127] Committee on Economic Social and Cultural Rights, The right to the highest attainable standard of living (General Comments), General Comment 14, para. 16.

[128] U.N. Guidelines, para. 28(c).

[129]The voluntary HIV-1 Counseling and Testing Efficacy Study Group, "Efficacy of voluntary HIV-1 counseling and testing in individuals and couples in Kenya, Tanzania, and Trinidad: a randomized trial," The Lancet, July 8, 2000, pp. 102-112.

[130] See Thomas M. Painter, "Voluntary counseling and testing for couples: a high-leverage intervention for HIV/AIDS prevention in sub-Saharan Africa," Social Science & Medicine 53 (2001), pp. 1397-1411 (citing relevant studies); and S. Maman et al, "Women's barriers to HIV-1 testing and disclosure: challenges for HIV-1 voluntary counseling and testing," AIDS Care, Vol. 3, No. 5 (2001), pp. 595-603.

[131] Joint United Nations Programme on HIV/AIDS, Counseling and voluntary HIV testing for pregnant women in high HIV prevalence countries: Elements and issues(hereinafter UNAIDS Prenatal HIV Testing Paper) (Geneva: UNAIDS, October 1999), Revised reprint November 2001, UNAIDS/01.70E.

[132] Ibid., p. 9.

[133] Ibid., p. 17; and World Health Organization, HIV/AIDS and Sexually Transmitted Infections Initiative, Voluntary Counseling and Testing for HIV Infection in Antenatal Care, Practical Considerations for Implementation, (Geneva: World Health Organization, September 1999), p. 15

[134] Human Rights Watch interview with Clara Prez, Santo Domingo, January 15, 2004.

[135] Ley 55-93 sobre el SIDA [AIDS law], article 21.

[136] Secretara de Estado de Salud Pblica y Asistencia Social, Normas Nacionales para la Consejera en ITS/VIH/SIDA, p. 36.

[137] Human Rights Watch with [name withheld], HIV counselor at public hospital, Santiago, January 19, 2004.

[138] Human Rights Watch interview with Jessica Torres, San Pedro de Macors, January 14, 2004.

[139] Human Rights Watch with [name withheld], HIV counselor at public hospital, Santiago, January 19, 2004.

[140] ICCPR, article 17.For text of article 17, see footnote 88.

[141] S. Maman et al, "Women's barriers to HIV-1 testing and disclosure: challenges for HIV-1 voluntary counseling and testing," AIDS Care, Vol. 13, No. 5, p. 601.

[142] UNAIDS Prenatal HIV Testing Paper, p. 8.

[143] Human Rights Watch interview with Rosa Polanco, Santiago, January 17, 2004.

[144] Human Rights Watch interview with Dominga Cespedes, La Romana, January 12, 203304.

[145] Human Rights Watch interview with Rosa Lantigua, Puerto Plata, January 20, 2004.

[146] Human Rights Watch interview with Yesfanil Almonte, Puerto Plata, January 24, 2004.

[147] Human Rights Watch interview with Maria Prez, Puerto Plata, January 21, 2004.

[148] Refers to nevirapine, see footnote 116.

[149] Human Rights Watch interview with Alicia Lpez, Santiago, January 19, 2004.

[150] Human Rights Watch interview with Rosalia Rodrguez, Santo Domingo, January 15, 2004.

[151] Human Rights Watch interview with Alesandra Ebrito, San Pedro de Macors, January 14, 2004.

[152] Human Rights Watch interview with Rosario Almonte [not her real name], former HIV/AIDS counselor, La Romana, January 13, 2004.

[153] Human Rights Watch interview with Jos Antonio Matos, deputy director, Maternal-Infant Health Program, Ministry of Public Health and Social Support, Santo Domingo, January 27, 2004.

[154] Human Rights Watch interview with Jessica Fernndez, Santiago, January 19, 2004.

[155]ICESCR, arts. 2(2) and 12. For full text of article 2(2), see footnote 58.Article 12 reads:"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 to the present Covenant to achieve the full realization of this right shall include those necessary for: (a) The provision for the reduction of the stillbirth-rate and of infant mortality and for the healthy development of the child; (b) The improvement of all aspects of environmental and industrial hygiene; (c) The prevention, treatment and control of epidemic, endemic, occupational and other diseases; (d) The creation of conditions which would assure to all medical service and medical attention in the event of sickness."

[156] Human Rights Watch interviews with Csar Castellanos, associate researcher, National Health Institute [Instituto Nacional de la Salud, INSALUD], Santo Domingo, January 9, 2004; with Felipa Garca, president, Solidarity Alliance for the Fight Against AIDS [Alianza Solidaria Para la Lucha Contra el Sida, ASOLSIDA], Santo Domingo, January 7, 2004; and with Csar Rosario, associate, Dominican Human Rights Committee [Comit Dominicano de Derechos Humanos], Santo Domingo, January 9, 2004.

[157] Human Rights Watch interview with Juana Daz, Santo Domingo, January 30, 2004.

[158] Human Rights Watch phone interview with Rebeca Prez, Santo Domingo, January 30, 2004.

[159] The Dominican Republic's national program to reduce the risk of parent-to-child HIV transmission sets as a specific goal that 100 percent of mothers living with HIV should give birth by cesarean section.Secretara de Estado de Salud Pblica y Asistencia Social, Programa Nacional de Reduccin de la Transmisin Vertical del VIH/SIDA Repblica Dominicana, p. 10 and p. 29.According to Alan Berkman, who serves as a consultant to ColumbiaUniversity's MTCT Plus Initiative, this policy to encourage all pregnant women living with HIV to undergo cesarean sections is an anomaly.Berkman further told Human Rights Watch that the insistence on cesarean sections in the Dominican Republic might present a substantial ethical problem if women were not properly briefed about both the risks and the advantages associated with undergoing cesarean sections.Human Rights Watch phone interview with Alan Berkman, assistant professor, ColumbiaUniversity, April 29, 2004.

[160] Human Rights Watch interview with Rosalia Rodrguez, Santo Domingo, January 15, 2004.

[161] Doctors face a real risk of HIV transmission when they carry out surgical interventions on persons living with HIV.The Dominican Republic's national norms on care for sexually transmitted infections set out procedures for minimizing the exposure to this risk.The norms do not mention post-exposure phophylaxis (PEP), a short and affordable course of antiretroviral drugs to reduce the risk of HIV transmisin following exposure to HIV. Secretara de Estado de Salud Pblica y Asistencia Social, Normas y Procedimientos Nacionales para las Atencin de las Infecciones de Transmisin Sexual (ITS), pp. 43-44.Some delay may be caused by the implementation of these procedures.

[162] The exchange rate used is seventeen Dominican pesos to one U.S. dollar, the average rate in 2002.

[163] Human Rights Watch interview with Maria Bez, Santiago, January 19, 2004.

[164] Human Rights Watch interview with Guadalupe Torres, Santiago, January 19, 2004.

[165] Human Rights Watch interviews with Felipa Garca, president, Solidarity Alliance for the Fight Against AIDS (Alianza Solidaria Para la Lucha Contra el Sida, ASOLSIDA), Santo Domingo, January 7, 2004; with Dulce Almonte, Dominican Network of Persons Living with VIH (Red Dominicana de Personas que Viven con VIH/SIDA, REDOVIH), Santo Domingo, January 8, 2004; and with Norka Knight, psychologist, Fundacin Mir, La Romana, January 13, 2004.

[166] Human Rights Watch interview with Rosario Almonte, La Romana, January 13, 2004.

[167] Human Rights Watch interview with H. Sams Faulkner, medical doctor, ChristianMedicalCenter (Centro Mdico Cristiano), La Romana, January 13, 2004.

[168] Human Rights Watch interview with Jose Antonio Matos, deputy director, Maternal-Infant Health Program, Ministry of Public Health and Social Support, Santo Domingo, January 27, 2004.

[169] Human Rights Watch interview with Yolanda Pie, Santo Domingo, January 15, 2004.

[170] E-mail message from Mara Isabel Tavarez, general coordinator, National Program for Comprehensive Care of Persons Living with HIV/AIDS [Programa National de Atencin Integral a PVVS], Ministry of Public Health and Social Support [Secretara de Estado de Salud Pblica y Asistencia Social]. to Human Rights Watch, April 5, 2004.

[171] U.N. Guidelines, article 30(c).

[172]Currently, breaches of confidentiality can be sanctioned by one to six months in prison and a fine of ten to one hundred pesos (U.S.$0.22 to U.S.$2). Given the paltry sums set forth in the current law, moreover, fines can be expected to have little or no deterrent effect unless and until the sums are adjusted upward.The exchange rate used is 45 Dominican pesos to one U.S. dollar, the rate on March 26, 2004.

[173] Human Rights Watch interview with Eddy Prez-Then, deputy executive director, NationalResearchCenter on Maternal and Child Health (CENISMI), Santo Domingo, January 9, 2004.

[174] Human Rights Watch interview with Maria Isabel Tavrez, general coordinator, National Program for Comprehensive Care of Persons Living with HIV/AIDS, Ministry of Public Health and Social Support, January 29, 2004.Private clinics are subject to the same legal norms as public hospitals, but may not offer the same program to prevent parent-to-child HIV transmission.

[175] See Eddy Prez-Then (ed), Monitoreo de las Estrategias de Reduccin de la Transmisin Vertical del VIH en la Repblica Dominicana[Monitoring of Strategies to Reduce Vertical Transmission of HIV in the Dominican Republic] (Santo Domingo: Centro Nacional de Investigaciones en Salud Materno Infantil, CENISMI, 2002), Technical Publication Series I; Mara Isabel Tavarez, "Programa Nacional de Reduccin de la Transmisin Vertical del VIH"; and Eddy Prez-Then et al, "Preventing Mother-to-Child HIV Transmission in a Developing Country: The Dominican Republic Experience," Journal of Acquired Immune Deficiency Syndromes, Volume 34(5), 15 December 2003, pp. 506-511.

[176] Human Rights Watch interview with Jose Antonio Matos, deputy director, Maternal-Infant Health Program, Ministry of Public Health and Social Support, Santo Domingo, January 27, 2004.

[177] The standard of voluntary counseling and testing is sometimes referred to as "voluntary opt-in" testing.Megan Rauscher, "'Opt-Out' HIV Tests Could Reach More Pregnant Women," Reuters,November 14, 2002.

[178]Government health authorities in the United States and a number of other countries have in recent years recommended the practice of "opt-out" testing for pregnant women, where, in some formulations, women are told that HIV testing is a regular part of prenatal diagnostics and care, and the HIV test is performed unless the women actively refuses it.Megan Rauscher, "'Opt-Out' HIV Tests Could Reach More Pregnant Women."See also Centers for Disease Control and Prevention (CDC), Revised Guidelines for HIV Counseling, Testing and Referral and Revised Recommendations for HIV Screening of Pregnant Women [online] http://www.cdc.gov/mmwr/PDF/rr/rr5019.pdf (retrieved, April 15, 2004).Some experts refer to "routine" HIV testing, in which testing is the default policy for a particular population or in particular circumstances.Kevin De Cock, Dorothy Mbori-Ngacha, and Elizabeth Marum, "Shadow on the continent: public health and HIV/AIDS in Africa in the 21st century," The Lancet Vol. 360, July 6, 2002, pp. 67-72.

[179] Human Rights Watch interviews with Laura Pujols, legal consultant, Presidential AIDS Council (Consejo Presidencial del SIDA, COPRESIDA), Santo Domingo, January 29, 2004; and with Ernesto Guerrero, director, Country Program, Dominican Republic Office, Joint United Nations Programme on HIV/AIDS, Santo Domingo, January 29, 2004.

[180]Some experts have argued that opt-out or routine testing may, in fact, lead to even less pre- and post-test counseling, unless stringent measures are imposed to avoid this situation.These experts have noted, that characterizing HIV testing as "routine" may give health care providers the impression that they are relieved of their responsibility to give information about HIV and seek informed consent for testing.Canadian HIV/AIDS Legal Network, "HIV Testing and Pregnancy" [online] http://www.aidslaw.ca/Maincontent/issues/testing/e-info-ta14.htm (retrieved May 26, 2004).

[181] Office of the United Nations High Commissioner for Human Rights and the Joint United Nations Programme on HIV/AIDS, HIV/AIDS and Human Rights International Guidelines(from the second international consultation on HIV/AIDS and human rights 23-25 September 1996, Geneva) (U.N. Guidelines) (Geneva: UNAIDS, 1998), U.N. Doc. HR/PUB/98/1, para. 28(b); and Joint United Nations Programme on HIV/AIDS, "UNAIDS Policy on HIV Testing and Counseling," Report 1/8/1997 [online] http://www.unaids.org/en/in+focus/topic+areas/hiv+diagnostic+tests.asp (retrieved on May 26, 2004).

[182] U.N. Guidelines, para. 97.

[183] See Committee on Economic, Social and Cultural Rights, "The nature of States parties obligations (Art. 2, par.1), General Comment 3 (General Comments," December 14, 1990, in particular paras. 5, 9, and 10; and Human Rights Committee, "General Comment No. 05: Derogation of rights (Art. 4)," July 31, 1981.