Providers of reproductive health services struggle daily with ethical decisions that can have profound consequences for the well-being of their clients.
Serving adolescents, HIV-positive clients, and women whose partners are violent or who oppose contraception are among the many ethical issues that reproductive health service providers routinely face. So, too, is balancing pressures to help reduce population growth with clients' rights to make contraceptive decisions freely.
There is no correct approach that fits every case. At the very least, the ethical delivery of reproductive health services must begin with providers carefully considering the possible consequences of their actions, based upon three well-established cornerstones of medical ethics: respect, beneficence, and justice (see "Human Research Must Protect Participants"). And providers should remember that clients make the final decisions about the services they receive.
Not uncommonly, however, providers face situations in which these ethical principles are in conflict with each other. For example, respecting the confidentiality, and thus privacy, of clients is considered to be the ethical duty of all health professionals. However, providers may feel that disclosing confidential information is ethically correct in order to maintain societal norms or protect the health of the public at large.
Adolescents
As with all clients, adolescent clients' specific circumstances should be carefully considered when providing reproductive health services. For example, particular care must be taken in the case of a young adult who wishes to be sterilized, since the procedure is permanent. Sterilization is inappropriate for young teenagers, and thorough counseling is needed for young adults who are older, in their early 20s. Studies show that up to 20 percent of women sterilized at a young age (younger than 25 years old, in one study) later regret this decision.1
Providers should respond to adolescents' requests for reversible contraceptive services with courtesy, while maintaining confidentiality. Research has demonstrated that adolescents are more likely to seek such services from providers they feel they can trust and from providers who respect their right to privacy.2 "Youth are sensitive to the idea that the information they share about their sexual behavior will not be held in confidence, but instead will be shared with their parents or other adults," says Dr. Cindy Waszak, an FHI senior scientist with expertise in adolescent reproductive health. "They feel they lack control, that their behavior will be particularly scrutinized and judged by adults, and they realize that the consequences of such information being disclosed may be severe.
"They have good reason to be concerned," she adds. "Many providers do not see adolescents as having the same rights as adults, and may be reluctant to serve them without parental consent, even when policies spell out the right of adolescents to receive non-permanent contraception or treatment for sexually transmitted infections (STIs) without such consent. Many providers either deny services to adolescents or fail to provide confidentiality because they sincerely worry that freely making contraceptive methods available to adolescents will encourage them to be sexually active, although research indicates that this is not the case.3 Finally, many providers choose to deny the fact that adolescents are sexually active."
However, the decision not to provide reproductive health services to adolescents in a confidential setting can cause far more harm than good. "Providers need to ask themselves whether they are providing the best possible care to their clients, regardless of age," says Dr. Waszak. "An adolescent who is turned away or whose reproductive health information is not held in confidence may well end up with an unplanned pregnancy, STI, or ostracism from parents or others in the community. Any of these outcomes can have life-long adverse consequences for an adolescent."
In cases where the law, administrative policies, or guidelines require parental consent for certain reproductive health services, the provider must follow the law. However, the provider can recommend options that do not require disclosure, such as buying condoms at a pharmacy rather than getting pills at a clinic. Also, the provider can either encourage the client to talk with her or his parents or offer to talk to the parent and adolescent together.
"Providers also need to keep in mind that some girls are in situations in which they find it difficult, if not impossible, to refuse sex," says Dr. Waszak. "In such cases, it is important for providers to respect an adolescent's courage and resolve even to seek reproductive health services. It is unethical for providers to turn away or betray the confidence of adolescents who have made such an effort to get help."
HIV-positive clients
Many clients who are HIV-positive or have other STIs do not know they are infected. In many settings, testing is unavailable. In others, clients who suspect they are infected may be reluctant to be tested. They may fear receiving a positive test result, particularly if treatment is unavailable. They also may worry that a positive test result will not remain confidential, leading to severe social consequences.
Confidential and anonymous HIV testing services are slowly becoming available, and providers should promote the use of such services, most experts agree. (In confidential testing, a person's identity is known but test results are kept confidential. In anonymous testing, the identity of the person being tested is not recorded or required.)
"People who learn that they are not infected will be encouraged to maintain their HIV-negative status," says Dr. Eric van Praag, an FHI expert on HIV/AIDS care and support services. "Meanwhile, those who learn they are infected will become aware of the urgent need to adopt safe sexual behaviors to avoid infecting others, receive contraceptive counseling that takes their HIV status into account, and be actively referred for medical care and social support if needed. Pregnant women can receive treatment to reduce the risk of transmission of HIV to their unborn children. A diagnosis also allows infected individuals to obtain appropriate counseling and to plan for the future, anticipating how to care for surviving children and to make wills."
In Kenya, Tanzania, and Trinidad, a study conducted by a group that included FHI and involved some 4,200 people between 1995 and 1998 showed that HIV counseling and testing reduced risky behaviors associated with the sexual transmission of HIV. Over six months, individuals receiving HIV counseling and testing were more than twice as likely to report declines in unprotected intercourse with non-primary partners than individuals who received only basic information about HIV transmission and correct condom use. Self-reported behavioral changes were confirmed by STI incidence rates. However, the study showed that clients were reluctant to disclose test results for fear of stigmatization and discrimination.4
Their fears are well-founded in most settings. In developing countries, people usually depend on their families and communities for support and care. But, where stigmatization is associated with HIV/AIDS, disclosure can lead not only to rejection by family members, but loss of work and friends, physical and sexual assaults by male partners, and even deadly attacks.5
The Joint United Nations Programme on HIV/AIDS and the World Health Organization (WHO), which jointly provide surveillance of the global HIV/AIDS and STI epidemic, have stated that all such surveillance programs "should have policies that protect the privacy of patients and the confidentiality of disease control data."6 Furthermore, health care providers are bound by their profession to maintain the confidentiality of client information. And many do so.
However, positive test results often are disclosed, either carelessly or on purpose. Reports of such breaches have come from many countries. For example, HIV/AIDS reporting is supposed to be confidential in Sri Lanka, but some people have reported being stigmatized after their HIV status was carelessly disclosed and became publicly known against their wishes. Some health staff in Sri Lanka have been accused of demanding money from people who tested positive in exchange for not disclosing their HIV status to the community.7
A small study in Russia concluded that confidentiality is not well understood by physicians. "There is little evidence that principles of confidentiality have received much consideration," the researchers concluded. For example, even at sites promising anonymous HIV testing, little effort was made to conceal patient identity on laboratory or insurance forms.8
Even well-intentioned providers sometimes disclose confidential information about HIV status. They argue that the confidentiality afforded infected people may jeopardize the well-being of uninformed, healthy partners. By guarding such deadly secrets, some providers fear that they may lose the trust of the community.
These concerns are so acute that partner notification against client wishes – although usually qualified by a long list of conditions – has been accepted in some countries. In the United Kingdom, for example, the doctor who believes an HIV-positive patient has not informed his or her sexual partner (and cannot be persuaded to do so) may notify the partner, but must be prepared to justify such a decision. In Thailand, where husband and wife are legally considered to be the same person, either must be informed of their spouse's HIV status.9
"In general, however, if a client is not ready to disclose his or her HIV-status to anyone, there is little a provider can do except repeatedly discuss with the client when and how to disclose and to whom," says FHI's Dr. van Praag. Notably, HIV counseling and testing services have been developed in Uganda, Rwanda, and other African countries to facilitate partner communication about HIV status. FHI researchers in Kenya and Tanzania found couple HIV counseling to be more difficult than individual counseling, but more likely to reduce high-risk sexual behaviors.10
Despite the ethical duty of health professionals and reproductive health providers to care for HIV-infected patients or clients, some do not fulfill this obligation. In India, for example, 22 of some 100 doctors interviewed said they did not treat patients with STI complaints. "It is most regrettable that the medical profession, which should be the first to offer care and support to HIV-infected people, actually discriminates against them and rejects HIV/AIDS patients in India," researchers concluded.11
Discrimination against HIV-positive patients not only threatens their well-being, but can also jeopardize the safety of other health professionals. Dr. María Eugenia González, an obstetrician and gynecologist at the General Hospital of Mexico in Mexico City, recalls how staff there could have been endangered because a woman in labor lied about her HIV status to gain admission to General Hospital, after being denied admission to other hospitals because of her HIV-positive status. "By the time she reached our hospital she was desperate for medical attention," says Dr. González, chosen for a research fellowship under FHI's Fellowship in Con-traceptive Technology Research. "Immediately after being admitted, she gave birth." Although General Hospital routinely uses precautions to protect staff from HIV infection, staff at some hospitals might not be as careful if they did not know a patient was HIV-positive.
Do No Harm
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Harm from partners
Women are more likely to be injured, raped, or killed by a current or former partner than by any other person. In reliable, large-scale studies, results indicate that between 16 percent and 52 percent of women have been physically abused by a partner. Surveys in a number of countries show that from 10 percent to 15 percent of women report being forced to have sex by their intimate partner.12
Common as it is, domestic violence often remains hidden. The spouse was the aggressor in three of every four reported cases of abuse among 179 women using health services in Santo Domingo, Dominican Republic. Yet, half of the interviewed women who had suffered physical or emotional abuse – with over three-quarters of those experiencing sexual abuse – said they had told no one about the violence before being interviewed for the study on violence.13 "Many abused women never tell," said L.J. Payán of PROFAMILIA's Santo Domingo clinic, where many of the women were interviewed.
Why should reproductive health providers consider it their ethical obligation to help clients who are victims of domestic violence?
"Violence is a reproductive health issue," says Donna McCarraher, an FHI research associate who has investigated intimate partner violence in Bolivia. "It can endanger pregnant women, and directly jeopardize the use of family planning and STI prevention and treatment. Also, for many women who are abused, health workers are the main and often the only contact for support and information."
Meanwhile, a married woman's life and health also can be seriously threatened if her spouse vetoes her use of family planning services. In many countries, providers need to follow spousal authorization requirements that are found in laws, regulations, clinic guidelines, and national ministry of health regulations. However, some providers require spousal consent simply because they fear that not getting such authorization will defy cultural values and bring reprisals against them.
Studies conducted in Kenya, Botswana, Burkina Faso, Senegal, and Tanzania by the Population Council found that some providers reported imposing more restrictions on contraceptive use than required by policy or service protocols. Spousal consent is not required for provision of combined oral contraceptives, condoms, intrauterine devices (IUDs), injectables, or Norplant in these countries. But, depending on the method and country, from 6 percent to 57 percent of some 2,000 providers in the studies still required it as of 1998. "For all countries, the level of spousal consent requirements for condoms is discouraging, particularly since many of these regions have a high prevalence of HIV and other sexually transmitted diseases," the study researchers observed. In Kenya, for example, 41 percent of some 444 providers reported restricting condoms without spousal consent, "suggesting an unwillingness to recognize the frequency of HIV transmission within married couples or a fear that the women would use the condoms in extramarital relationships."14
In the absence of legal requirements for spousal consent, providers have an ethical obligation to allow women to make independent decisions about contraception. The right of couples and individuals to decide freely on the number and spacing of their children has been repeatedly recognized throughout the world as a matter of principle: in 1974, at the World Population Conference in Bucharest; in 1984, at the Mexico City World Population Conference; and, in 1994, at the International Conference on Population and Development in Cairo. Furthermore, courts of several countries have held that spousal veto practices violate principles of personal privacy and autonomy and the right to health care. Courts in general agree that one partner may not compel the other to reproduce.15
Pressure
FHI and many other international health organizations believe that pressuring clients to use contraception is ethically wrong. Most countries uphold this position.
Nevertheless, there have been efforts in some countries to curtail rapid population growth, which can strain resources and lower the quality of life for all. For example, doctors may be offered incentives to meet quotas for IUD insertions and consequently pressure women to accept this method. Women in indigenous regions where language and cultural barriers exist between health providers and patients may be particularly vulnerable to pressure to use contraception.16
Clients' contraceptive preferences also may be overridden when providers – believing they know what is best – make decisions on behalf of clients. "One must remember that, in some settings, women themselves may prefer providers to make reproductive health decisions for them," says Dr. Irina Yacobson, an FHI assistant medical director who conducts contraceptive technology training for developing country providers. "In fact, they may feel that a provider who is supposed to know what is best for them – yet still does not make a decision for them – simply does not care. Ideally, though, a provider should explain to the client that, while the provider knows what methods the woman can use, only the woman will know, based on her personal circumstances, what method is best for her."
In general, providers of contraception – particularly long-acting methods – should offer methods without pressure as part of a wider menu, offering removal upon request of such methods as IUDs and the Norplant implant.
– Kim Best
References
Hillis SD, Marchbanks PA, Tylor LR, et al. Poststerilization regret: findings from the United States Collaborative Review of Sterilization. Obstet Gynecol 1999;93(6):889-95; Hardy E, Bahamondes L, Osis MJ, et al. Risk factors for tubal sterilization regret, detectable before surgery. Contraception 1996;54(3):159-62.
Kirby D, Waszak C, Ziegler J. An assessment of six school-based clinics: their reproductive health services and impact on sexual behaviors. Fam Plann Perspect 1991:23(1):6-16; Ford CA, Millstein SG, Halpern-Felsher BL, et al. Influence of physician confidentiality asssurances on adolescents' willingness to disclose information and seek future health care: a randomized controlled trial. JAMA 1997;278(12):1029-34.
Kirby D. Emerging Answers: Research Findings on Programs to Reduce Teen Pregnancy. Washington: The National Campaign to Prevent Teen Pregnancy, 2001.
The Voluntary HIV-1 Counseling and Testing Efficacy Study Group. Efficacy of voluntary HIV-1 counselling and testing in individuals and couples in Kenya, Tanzania, and Trinidad: a randomised trial. Lancet 2000;356(9224):103-12.
Raubenheimer M. AIDS activist murdered. Women's Health News Views 1999;29:1-2; Gielen AC, O'Campo P, Faden R, et al. Women's disclosure of HIV status: experiences of mistreatment and violence in an urban setting. Women Health 1997;25(3):19-31; Gielen AC, Fogarty L, O'Campo P, et al. Women living with HIV: disclosure, violence, and social support. J Urban Health 2000;77(3):480-91.
World Health Organization Epidemic Disease Control, UNAIDS, UNAIDS/WHO Working Group on Global HIV/AIDS and STI. Guidelines for Sexually Transmitted Infections Sur-veillance. (Geneva: World Health Organization, 1999)1-38.
Ganasinghe M. Country watch: Sri Lanka. Sexual Health Exchange 2000;1:12-13.
Platt L, McKee M. Observations of the management of sexually transmitted diseases in the Russian Federation: a challenge of confidentiality. Int J STD AIDS 2000;11(9):563-67.
Disclosure of HIV status and human rights: the duties and responsibilities of couples, medical professionals, family members and the state. Reprod Health Matters 2000;8(15):154, 157.
Grinstead O, van der Straten A, The Voluntary HIV-1 Counseling and Testing Efficacy Study Group. Counsellors' perspectives on the experience of providing HIV counseling in Kenya and Tanzania: the Voluntary HIV-1 Counseling and Testing Efficacy Study. AIDS Care 2000;12(5):625-42.
Taherullah Z, Palaniappan K. Medical ethics, hypocrisy and AIDS Prevention and Control Project (APAC)'s efforts. The XIII International AIDS Conference, Durban, South Africa, July 9-14, 2000.
WHO Violence against Women Infor-mation Pack. Violence and Injury Prevention. Violence against Women in Families. Geneva: World Health Organization, 1997. October 18, 2001.
Payán LJ, Brache V, Alvarez F, et al. Prevalencia de Violencia contra la Mujer entre Usuarias de Dos Servicios de Salud en Santo Domingo, República Dominicana. Asociación Latinoamericana de Investigadores en Reproducción Humana (ALIRH), Curitiba, Brazil, April 30, 2001.
Miller K, Miller R, Askew I, et al., eds. Clinic-Based Family Planning and Reproductive Health Services in Africa: Findings from Situation Analysis Studies. New York: Population Council, 1998.
Cook RJ, Maine D. Spousal veto over family planning services. Am J Public Health 1987;77(3):339-44.
Kirsch JD, Cedeño MA. Informed consent for family planning for poor women in Chiapas, Mexico. Lancet 1999;354 (9176):419-20.
Many health workers do not have the time, training, resources, or support to help victims of domestic violence.
However, the World Health Organization states that, at a minimum, health workers can do the following:
Be attentive to possible symptoms and signs of abuse – such as pelvic infections, recurrent sexually transmitted infections (STIs), physical injuries, and depression – and follow up on them.
Where feasible as part of history-taking, routinely ask all clients about their experiences of abuse.
If abuse is suspected or evident, be sympathetic and do not blame the victim since this can reinforce isolation and self-blame.
Provide appropriate medical care and document in the client's medical records instances of abuse.
Identify available community resources and refer clients there.
Maintain the privacy and confidentiality of client information and records.1
"When working with a victim of domestic violence, the provider's first priority probably should be to evaluate the woman's safety in terms of risk of recurrence of violence, adverse reproductive health outcomes, or death through homicide or suicide," says Alessandra Guedes, a gender-based violence program officer at International Planned Parenthood Federation/Western Hemisphere Region (IPPF/WHR) in New York. "Obviously, it is essential for providers to take immediate action if the woman is in serious danger." This may mean helping victims of domestic violence to prepare an escape plan – knowing where to go and what to take with them if the danger becomes too great.
The provider should also keep in mind the credo "do no harm." This includes not blaming a woman for the domestic violence she has suffered. "Health workers, for example, may blame a woman for remaining in an abusive situation without understanding the economic and social constraints she faces or the fact that many abused women love their partners and do not want to leave them … they just want to stop being beaten," says Donna McCarraher, an FHI research associate who has studied intimate partner violence. "Providers of family planning also may blame a woman who fails to follow their advice to use condoms. But if the woman knows that trying to negotiate condom use will lead to a beating, giving her another condom lecture will only succeed in further shaming her."
In many settings, domestic violence is accepted by women as well as men and will only be reduced as basic human rights are recognized. Until that time, while providers should not condone such abuse, they will be limited in what they do by the institutional support they receive. "In general, a provider who wishes to take the first step of trying to identify victims of domestic violence should have a specific goal," warns McCarraher. "Is it to enable the provider to give better care? Is it to provide women with an opportunity to discuss their situation and reinforce the fact that the abuse they suffer or have suffered is no fault of their own? Or is it to refer an abused spouse to the appropriate services? If the goal is referral, providers must be aware of what resources exist for violence victims. The point is that, if you ask a victim if she or he has been abused, be prepared to act. Otherwise, you may do more harm than good."
To be prepared to act, providers need substantial guidance and training, coupled with institutional support. Guidance for ways to end violence against women is available from The Johns Hopkins School of Public Health Population Information Program at http://www.jhuccp.org/pr/l11edsum.stm.
– Kim Best
Reference
WHO Violence against Women Information Pack. Violence and Injury Prevention. What Health Workers Can Do. Geneva: World Health Organization, 1997. October 18, 2001.
Just because certain practices have existed for centuries, are widespread, and are widely accepted in some cultures does not make them ethically justifiable.
Such a practice is female genital cutting (FGC) or female circumcision, which involves the partial or total removal of the external female genitalia or other injury to the female genital organs. The prevalence of FGC is estimated to be at least 90 percent in some African and Middle Eastern countries. In such cultures, FGC is often accepted by both women and men. Many women believe that FGC ensures that they will be accepted by their community. They do not know that it is not practiced in most of the world.
The World Health Organization (WHO), the United Nations Children's Fund, and the United Nations Population Fund have jointly stated that FGC causes unacceptable harm and have called for its complete eradication.1 Immediate complications of FGC include hemorrhage, shock, infection, urine retention (often leading to urinary tract infections), and injury to adjacent tissue (sometimes resulting in incontinence). Long-term complications include bleeding, anemia, difficulty urinating, recurrent urinary tract infections, incontinence, chronic pelvic infections, infertility, vulval abscesses, scarring, difficulties menstruating, sexual dysfunction, and problems in pregnancy and childbirth.
It has been suggested that these harmful health consequences could be reduced while maintaining the deeply-rooted FGC tradition were the procedure performed by trained medical professionals in hygienic settings. This trend to "medicalize" the procedure is arising in several settings, including Egypt and Kenya.
However, WHO has consistently and unequivocally advised that FGC, in any of its forms, should not be practiced by any health professional in any setting – including hospitals or other health establishments.2 "If an individual reaches the age of consent and wants to have the procedure done in a country where it is legal, then that is her decision and her right," says Dr. Ian Askew, a senior program associate with the Population Council, which seeks to eradicate the practice. "But FGC is usually performed on children or women too young to give consent, and performing FGC without consent is a clear violation of their basic human rights.
"In Kenya and Mali, the ministries of health have explicitly banned the practice in their facilities and by their staff, but the impact of these policies is not clear," says Dr. Askew. "Whether directives banning FGC will lead to clandestine cutting by health professionals, renewed use of traditional FGC practitioners, or elimination of the practice is not known."
Institutions working to eliminate FGC generally think that changing beliefs that perpetuate FGC should be the focus of interventions seeking to eradicate this harmful practice, says Dr. Laila Nawar, a regional advisor to the Population Council in Cairo, Egypt. In Mali, the Population Council has encouraged health practitioners to cease practicing FGC, and urged them to persuade clients to discontinue the practice.
– Kim Best
References
World Health Organization, UNICEF, United Nations Population Fund. Female Genital Mutilation: A Joint WHO/UNICEF/UNFPA Statement. (Geneva: World Health Organization, 1997)1-20.
World Health Organization, UNICEF, United Nations Population Fund.
