PART I

Maria, a 36-year-old HIV-infected Latino woman, gave birth to an HIV-infected daughter, Amelia. Maria does not want Amelia to know that either of them has HIV. Amelia is now 10 years old. Amelia has been told she takes medications for “a problem in her blood.” Recently, Amelia says she does not like taking the medication, and occasionally misses doses. The clinic staff have raised the issue of whether Amelia should be told about her diagnosis. In the near future, she will be at the age at which girls often become more interested in boys or sexual behavior. Also, her social worker feels that if Amelia knew her diagnosis, she might be more adherent to her medications.

But Maria says that she absolutely does not want her daughter to know. Maria believes Amelia is still too young, and will be emotionally devastated. Maria says that it is her responsibility — and only her responsibility — as a mother to “protect” her child and that her daughter is “not ready” to know. Maria says that Amelia is “a good girl” and will not be sexually active until she is married.

The social worker thinks Maria feels very guilty about having transmitted the virus to her daughter. Maria herself became infected through a former boyfriend, who had a history of intravenous-drug use. Still, the staff is concerned and thinks Maria should begin to reconsider.

The staff thus confronted several ethical dilemmas. Does the daughter have a right to know her diagnosis? Does the mother have a right not to disclose the diagnosis to the daughter? Does a mother have a right to the privacy of her own diagnosis, which could be threatened if her daughter learns of her own status? Should the staff ever tell the daughter if the mother does not want them to? If the daughter wants to know more about her condition, what should the staff say? Should she still be told simply that she has “a blood disease”? Are there other approaches the staff can take, and if so, what?

This case is typical of many. Parents often fear that disclosure may distress the child and other family members. Healthcare providers often advocate disclosure, due to the possible psychological and medical benefits for the child, as well as public health concerns (that is, the possibility of transmission to sexual partners).

Legally, there is no clear mandate concerning most of these disclosure dilemmas. Federal and state laws do not appear to address diagnosis disclosure to children explicitly. Many state laws do protect the privacy of information regarding a person’s HIV status, except in very specific circumstances;¹² and these laws may prevent HCWs from informing a child that he or she was perinatally infected with HIV, as such a disclosure would result in violating the confidentiality of the mother’s HIV diagnosis. In at least one state (that is, Georgia) a physician may be warranted in telling a child that he or she was perinatally HIV infected, as the law supports a physician’s disclosure of a mother’s HIV diagnosis to a child, given reasonable belief that the child is at risk of being HIV infected.¹³

Other laws that address the rights of a child versus the rights of a parent are worth noting. Generally, laws assume that parents act in the best interests of the child. The law might thus support a parent’s decision regarding disclosure. But the law recognizes that in certain circumstances, and for various reasons, parents may not act in their child’s best interest. According to the principle of parens patriae, protection of the child’s welfare outweighs the parents’ right to refuse medical treatment for the child,¹⁴ though whether parents nonetheless have a right to refuse disclosure to a child is unclear. The Storar case set a precedent that a parent cannot deprive a child from life saving treatment.¹⁵ Similarly, Article 10 of the N.Y. State Family Court Act established a legal procedure to protect children from physical, mental, and emotional mistreatment. However, parents often consent to treatment, but to not disclosure to an HIV-infected child. Whether nondisclosure alone ever constitutes mistreatment is debatable. Other legal precedents have granted adolescents some treatment-related autonomy. Adolescents may petition courts for “emancipated minor” status to be eligible for healthcare coverage, or may qualify for “mature minor” status that allows older children who understand the associated risks and benefits to initiate certain treatments without parental consent when parental consent may be difficult to obtain.¹⁶ Yet the case of McChandless v. State suggested that physicians should not treat a minor without parental consent when the parents are available within one week, during which time treatment delay would not alter the outcome.¹⁷ In all states, an adolescent infected with a sexually transmitted disease (STD) such as syphilis can receive treatment without parental notification, but other STDs differ from HIV, since in some states decisions about parental notification for STD services is at physicians’ discretion.¹⁸ Yet clearly these precedents refer to treatment, not disclosure.

When children are in foster care, only some foster care parents — especially those who have a medical foster home — have legal rights concerning the child’s healthcare. Typically, foster care agencies assume responsibility for the child’s healthcare, and often require consent from biological parents (or the court) before children receive specialized care. Yet how this responsibility and consent apply to disclosure, and how healthcare teams can best address disclosure to children in foster care, is not clear. The AAP states that test results “should be provided by the child’s physician to foster parents, biological parents (if possible), foster care agency and the child (if old enough to comprehend and if disclosure is appropriate to the developmental level of the child).” But this organization does not say when or how foster parents should disclose when the child inquires before being old enough to understand the diagnosis,¹⁹ or when the child is old enough.

In short, in facing dilemmas concerning disclosures to children, given the absence of other legal guidance, HCWs must make difficult ethical decisions.

As depicted in table 1, numerous sets of ethical issues arise both for and against disclosure and need to be considered and weighed — related broadly to principles of autonomy, beneficence, nonmalfeasance, and justice. For each of these principles, reasons exist both pro and con. Hence, the specifics of each case play important roles in balancing these issues. These broad categories of concerns overlap, but we use them here to structure and clarify the discussion.

The principle of autonomy might dictate that Amelia has a right to know her diagnosis. Yet ethically, minors are capable of giving assent, but not consent,²⁰ and parents have certain rights and responsibilities over their children’s care. Reasons to disclose include the notion that a child has a right to know what is occurring in his or her own body, yet Maria, as a mother, might be said to have autonomy as a parent, with rights to challenge healthcare providers’ suggestions. Maria has the responsibility to make decisions about what is in Amelia’s best interest, and thus has the right not to disclose the diagnosis to her daughter if no imminent danger exists. Moreover, arguably, Maria has the right potentially to withdraw Amelia from care (if to do so is not imminently life threatening to Amelia).

The principle of beneficence arises here, since disclosure could increase the child’s sense of autonomy, empowering the child, and facilitating his or her ability to care for him or herself. Knowledge of his or her status could help a child feel more control over certain issues concerning his or her self. Potentially, children who are aware of their status will also not be as angry or resentful about having been kept in ignorance as those who learn only at a later point in their lives.

Yet the ideal of nonmalfeasance might suggest that children have a right to be protected from harsh and painful information that is otherwise not necessary, and hence should not be told of their status. Since the infection did not result from the child’s behavior, the child should be protected from the psychological and social burdens of this disease, if possible.

Principles of beneficence and nonmalfeasance may be relevant, too, based on medical implications of disclosure decisions. Disclosure may²¹ or may not²² improve children’s medication adherence. This difference in findings may be due to various factors, for example, caregiver stress, cognitive functioning,²³ or age of the child.²⁴ Among other chronic conditions (for example, diabetes and asthma), nonadherence increases as children age.²⁵ If medication needs to be taken in public, stigma can hamper adherence.²⁶ Nonadherence may result, too, from parents giving adolescents “too much” responsibility for taking medications, after disclosure. Adolescents may also have difficulty considering the long-term consequences of nonadherence, or may not want to take their medication because it reminds them that they are “not normal,” or it might result in unintended disclosure to peers.

Psychologically, too, disclosure can be beneficial and reduce harm. HIV-infected youth who have not been told of their infection may encounter anxiety and related emotional and behavioral problems, sensing that “something is wrong.” Disclosure could thus alleviate some anxiety, and facilitate addressing these worries, since fears of the utterly unknown can be greater than those of a known disease. Disclosure may be helpful, too, by facilitating psychotherapy that can address HIV-related mental health issues, since HIV can then be discussed more directly and openly, rather than hidden. Knowledge of their HIV infection may enable adolescents to cope better with the disease and possible fears of death from HIV. Children unaware of their chronic health condition may experience more anxiety.²⁷

Yet disclosure can potentially cause psychological harm, as children may not be equipped to handle the implications of disclosure. Modified labeling theory provides a means to understanding some of the psychosocial consequences that might result from disclosure to children: prior to learning of their HIV status, children may have internalized societal conceptions of the meaning of being HIV infected (that is, as associated with risky sex or drug injection).²⁸ Thus, when children learn they are HIV infected, they may need to integrate their previous identity (of being HIV negative) with a new one (of being HIV positive). As they cope with the news of how they became infected, they may have to reconceptualize their mother’s and/or father’s identity as well. Modified labeling theory suggests that negative labels lead to negative outcomes for the person labeled. When children expect that they will receive negative labels or stigma for being HIV positive, they may respond in several ways, including secrecy, which is likely to be encouraged by some care-givers to avoid stigmatization. Such children may try to avoid any indication that they are different from their peers. HIV-infected children may withdraw or keep a comfortable distance from others who are known to be infected. Infected children may choose to spend their free time only with their family, who may actually encourage such isolation. Or, some HIV-infected children may affiliate with each other through treatment groups, but avoid being close to other children. Yet secrecy and withdrawal can lead to isolation, in turn fostering poor self-esteem and mental health problems, including depression. Alternatively, some children may want to divulge their diagnosis within their social networks to educate others or gain acceptance. This may result in increased support or, conversely, ostracization.²⁹ Disclosure might further marginalize a child already marginalized due to race, socioeconomic status, or HIV-related disabilities, or promote a false sense of friendships and social support.

Cognitively, children may lack the capacity to understand HIV and its implications, in which case disclosure may cause harm. Many children younger than 10 have less fully developed abilities to understand abstract concepts of having a chronic illness, especially if they do not feel ill.³⁰

Parents face additional ethical concerns as well. As mentioned earlier, the principle of autonomy would indicate that parents or legal guardians have the right to decide when to disclose to a child, because they may know best when exactly a child is prepared. They will also have to deal with the consequences. But to give caregivers unequivocal authority over disclosure might not always be best, since caregivers might not know or be able to do what is best for their child. Their fears that their child will get angry at them, or that parental sexual or drug use risk behaviors will be disclosed could interfere with their objectivity in considering their child’s best interests. HIV-infected parents may also have cognitive or mental health problems that impair their judgment.

Medically, the potential benefits and harms of disclosure on maternal health behaviors have been underexplored. After disclosure, a parent may decrease his or her sense of responsibility for medical monitoring of the child. Yet divulgence of a child’s HIV-positive status may also increase tensions due to revelations of prior parental secrets. Psychologically, disclosure to a child may benefit the parent, reducing the burden of keeping the secret, and facilitate support and caregiving. Disclosure may also enhance communication and connectedness between the parent and child, since previously the parent withheld information from the child and may have devoted energy to maintaining secrecy. However, following disclosure, if the child divulges the information to others, stigma can increase for the parent and family, adding stress, and possibly fueling maternal guilt, self-hatred, and low self-esteem. Parents may become overwhelmed or burdened by the child’s consequent distress. Disclosure could also lead to subsequent divulgence of additional family secrets that parents would prefer remain hidden (for example, concerning a parent’s drug use or sexual behavior).

A moral perspective might argue that the child would only need to know his or her status if he or she is sexually active, and because the child should be abstinent anyway, there is no reason to tell.

Given all of the above considerations and fears that Maria could remove Amelia from their medical care, the staff decided that if Maria did not want Amelia to know, they should not disclose at this time. Rather, they decided to delay disclosure, while working with Maria to determine the best time to move forward with the disclosure process. The staff also decided that if Amelia asked, they would refrain from answering, and instead discuss a plan with Maria, since they felt they should never lie about the diagnosis if Amelia inquired about it. Amelia did not ask for additional information about her “blood disease.”

PART II

Amelia is now 13 years old. She says that many girls she knows have boyfriends, but she denies that she is dating or romantically involved.

The staff again become concerned, and speak with Maria about telling Amelia, but Maria still refuses to disclose. Maria doesn’t want to upset her daughter whom, she feels, seems very well-adjusted. She had spoken to her priest who said that she has a right not to tell Amelia. The staff decide to continue to accede to the mother’s wishes.

Six months later, Amelia tells her doctor that she has a boyfriend, but denies having sex. Additional questions now arise as to whether the staff should tell Amelia at this point. Does a 13 year old have a greater right to know than a 10 year old? The staff wrestles with whether Amelia is sexually involved or likely to be in the imminent future.

When a child becomes sexually active, the presence of a third party — the sexual partner— introduces additional complexity into disclosure decisions. Here, the well-being of a third party — the daughter’s sexual partner, if one exists — is potentially at stake. The possible harm caused by nondisclosure could now involve the transmission of HIV to the potential sexual partner, since if the adolescent is aware of being HIV infected, he or she may be more likely to engage in safer sex (that is, using condoms). Although safer sex is by no means guaranteed following disclosure, an adolescent who is unaware of his or her HIV infection lacks this critical information, which can potentially help motivate prevention behaviors. Maria may have the right to make decisions about her daughter’s well-being, but not the well-being of a boyfriend, if one exists. The staff question whether to believe Amelia that she has not had sex, and decide to believe her, in part because of mutual trust developed over the years. The team thus decides again to respect Maria’s decision not to tell, but to continue to encourage Maria to move toward full disclosure.

PART III

Amelia is now 15 years old and has a boyfriend, and tells her doctor that she has had sex with him, but does not always use condoms. The physician decides not to break Amelia’s confidentiality about sexual activity, but tells Maria that it is time for Amelia to know her diagnosis, because Amelia is getting older and is at an age where many girls are sexually active and that she could endanger her partner. Maria objects to disclosure and says that Amelia goes to church regularly with her and would not have sex at this age.

The staff then wrestle with whether they should tell Amelia that she is HIV infected, in order to enable her to make informed decisions about whether or not she will expose her boyfriend to the sexual transmission of HIV. Should the staff encourage Amelia to inform her mother that she is sexually active, so that Maria would be more inclined to let Amelia be told about HIV? Or should the staff tell Maria that Amelia is sexually active, and then attempt to encourage her to inform Amelia of her HIV status? What rights, if any, does the boyfriend have here?

Ethically, the staff should tell Amelia at this point, though the issues here may still be complex. In particular, Amelia may not want to inform or protect the boyfriend. Disclosure alone may be beneficial in decreasing risky behavior — unsafe sex or substance use. However, youth with HIV may hesitate to use condoms, fearing that they will be seen as “unclean” by partners. Some have likely reached a level of moral development³¹ to want to avoid transmitting HIV to others. However, that desire may conflict with their wish to enhance or maintain their own psychosocial well-being or acceptance, or to appear “normal.” Additionally, disclosure might cause harm, since children may then feel angry about their HIV status, and have diminished hope for their future, leading to risky behavior without much concern about possible transmission to others, as has similarly been suggested among adults.³² For children with AIDS-related neurological impairments, care-givers and providers need to pay attention to the child’s own emerging sexual curiosity and interest, ability to read social cues, and social judgment, when considering what information is appropriate to provide, given the child’s level of impairment.³³ These determinations can be complicated, since HIV can also cause “adolescent-onset dementia,” with problems in processing speed, memory, executive planning, and judgment³⁴ that can contribute to transmission of the disease through sexual activity.³⁵

On balance, the staff decide at this point to inform Amelia of her HIV status and of the risk that she may have already transmitted HIV to her boyfriend, or could do so in the future if she continued having unprotected sex. They talk with Amelia about her concerns about telling her boyfriend, and help her to think about encouraging him to get an HIV test (for example, suggesting that they could go together to get tested for HIV) and to use condoms in the future. The staff inform Maria that they think that these discussions are important at this point. Maria, though with some reluctance, finally agrees to staff disclosure.

Amelia was very sad for a few weeks, and then grew angry with Maria for not having told her sooner. Amelia intimated that she always knew something was wrong, but was too afraid to ask anyone about it. Maria became concerned that Amelia had started to drink alcohol with her friends and to smoke marijuana.