Keywords

1 Overview

Many adolescents benefit from confidential health services. Concerns about privacy evolve as a normal aspect of adolescent development, and can influence adolescents’ willingness to seek health care and share information with their health care providers (English, 1990; Ford, English, & Sigman, 2004). Adolescents may be particularly concerned about privacy related to their sexual behaviors, substance use, and mental health. Adolescent sexual behaviors are linked to unintended pregnancy, high rates of sexually transmitted infections (STIs), and risk of HIV. Substance use is linked to increased risk for injury, death, substance abuse, and addiction.

Depression is common among adolescents and associated with risk of suicide, poor school performance, and participation in a range of health-compromising behaviors. These negative health outcomes encompass the major causes of morbidity and mortality in the adolescent and young adult age group. Effective clinic-based interventions exist to reduce participation in these risk-associated behaviors and treat depression (Council, 2009; Force, 2013). Connecting adolescents who can benefit from these interventions to services depends upon adolescents accessing health care settings and openly communicating with clinicians about sensitive health issues.

Confidentiality protections encourage adolescents to seek care and openly discuss issues related to sexuality, substance use, and mental health concerns—sometimes without parental consent or notification—allowing clinicians to fulfill their role in improving adolescent health. In this chapter we review the ethical principles and laws which support the availability of confidential adolescent health services. We also discuss implementing confidential adolescent health services in clinical settings, and issues important for several specific populations such as adolescents who are: in foster care; in juvenile justice systems; homeless; living with HIV; or being cared for within the context of the military health services.

2 Ethical Principles

Ethical principles which support the availability of confidential adolescent health services provide the framework for clinicians making decisions about when they can and cannot provide confidential services for adolescents in health care settings (English, 1990; Ford et al., 2004). Protecting the confidentiality of adolescents’ health information is a professional duty that derives from the moral tradition of physicians and the goals of medicine. The goals of medicine include curing disease, prolonging life, relieving suffering, and preventing illness. The basic ethical principles that can help guide health care professionals in their pursuit of these goals include respect for autonomy, beneficence, nonmaleficence, and justice (Beauchamp & Childress, 1994). Each of these principles also has specific relevance to confidentiality protection in adolescent health care as follows:

  • Respect for autonomy means that patient’s own wishes, ideas, and choices are to be supported during the process of helping them. Protection of confidentiality in a health care setting is derived from this principle. It represents an agreement between the patient and the health care professional that information about the patient during encounters will not be shared with others without the patient’s permission.

  • Nonmaleficence means that health care professionals avoid doing harm to the patient. Failing to respect an adolescent’s privacy or to honor an agreement of confidentiality might cause harm through disclosure of information to a parent or guardian, even though including parents in an adolescents’ care might generally be helpful to the adolescent.

  • Beneficence is the principle that requires action to further a patient’s welfare: doing good for the patient. Protecting confidentiality often enables a health care professional to benefit a patient. Offering confidential care to adolescent patients encourages them to disclose their symptoms and life circumstances fully and completely, thereby increasing the likelihood that they will receive appropriate care and enhancing the clinician’s capacity to help them.

  • Justice requires health care professionals to give adolescents a fair and reasonable opportunity to receive appropriate health care on the same basis as other groups in society. To the extent that the lack of confidentiality protection impedes adolescents’ access to health care they need, protection of confidentiality may be necessary to further the principle of justice.

Individual adolescents vary in their levels of psychosocial maturity and economic independence, as well as in their behaviors and family situations. The protection of confidentiality in adolescent health care should be grounded in the ethical principle of respect for autonomy, but must recognize that in specific circumstances it may be permissible or even necessary to breach confidentiality to further other important moral principles, such as beneficence or nonmaleficence.

Both the disclosure of confidential information and the failure to disclose may constitute a clear ethical breach in specific circumstances (English, 1990; Ford et al., 2004). A professional who fails to disclose confidential information, despite a likely benefit to the patient, merely because it would be inconvenient or difficult puts his or her own needs above those of the patient. For example, failure to disclose concerns that a patient is suicidal would be unethical for any reason. Similarly, a professional who breaks confidentiality merely because it seems “good for the patient,” without a strong and persuasive specific reason, engages in inappropriate paternalism (i.e., interference with a person’s freedom of action based on a wish to benefit them). Neither of these is morally defensible.

A breach of confidentiality—even one that is motivated by paternalism—may damage an adolescent’s trust in the health care professional. Therefore, it should be avoided unless a greater good can be achieved by breaching confidentiality. There are circumstances in which breaching confidentiality by disclosing information to an adolescent’s parents, caretakers, or others may lead to a greater benefit (for the patient or society). These circumstances might include cases of suicidal or homicidal ideation or acts, serious chemical dependence, and life-threatening eating disorders. “Justified paternalism” in the care of adolescents could be appropriate under these circumstances, provided there is reasonable evidence that an adolescent’s capacity for exercising autonomous choice is impaired and protecting the adolescent’s life is the central goal (Silber, 1989). In this view, protecting life outweighs the principle of autonomy. Even when a health care professional encounters a circumstance in which “justified paternalism” and disclosure better serves the adolescent, there is still a moral duty to respect the adolescent. This can be accomplished by explaining to the adolescent beforehand the basis of any decision to breach confidentiality and involving the adolescent in the process of identifying how and to whom the information will be disclosed.

3 Law

Numerous laws protect the confidentiality of health care information (English & Morreale, 2001). Many of these laws apply to adolescents who are minors as well as to adults. Nevertheless, there are some important differences based on the legal status of adolescents. Adolescents who are under the age of majority (usually age 18) are minors and cannot necessarily expect the same level of confidentiality protection under the law as adults. Adolescents who are age 18 or older are adults and should expect the same confidentiality protection as other adults.

3.1 Consent and Confidentiality

The concepts of consent and confidentiality are inextricably intertwined (English, 1990; Ford et al., 2004). First, when a minor’s own consent for health care is not legally sufficient, the process of obtaining consent from someone else compromises confidentiality. Second, even when minors are legally authorized to consent, the law may also permit (or require) that a parent or another person or entity be informed. Third, some medical privacy laws explicitly rely on the minor consent laws in delineating who controls the confidentiality of health care information for minors.

The law generally requires the consent of a parent when health care is provided to a minor child, but includes numerous exceptions (Holder, 1985). The exceptions include medical emergencies, care for the “mature minor,” and laws authorizing minors to consent to their own care (English, Bass, Boyle, & Eshragh, 2010; Sigman & O’Conner, 1991). Consent may also be required from a legal guardian or conservator for a person who is an adult but severely mentally incapacitated.

A legal basis for minors to consent to their own care also provides a strong foundation for protecting the confidentiality of the care. Every state has statutes that authorize minors to consent to medical care under a variety of circumstances (English et al., 2010). In some statutes, the authorization is based on the minor’s status, such as when the minor is emancipated, married, serving in the armed forces, pregnant, a parent, or a high school graduate; is living apart from parents; has attained a certain age; or has qualified as a mature minor. A mature minor is generally one who has the capacity to give an informed consent and has given a voluntary informed consent to low-risk medical care that is within the mainstream of recommended medical treatment. In other statutes, the authorization to consent to health care is based on the type of care needed, such as contraceptive services; pregnancy related care; diagnosis and treatment of STIs, HIV, or reportable diseases; treatment for drug or alcohol problems; care related to a sexual assault; or mental health services. While not every state has statutes covering minors in each of the above status categories or all types of “sensitive” services, every state does have some of these provisions. These minor consent laws reflect judgments that certain minors have attained a level of maturity or autonomy which makes it appropriate for them to make their own medical decisions or that adolescents generally are unlikely to seek certain “sensitive” but essential services unless they are able to do so independently of their parents.

3.2 Confidentiality and the HIPAA Privacy Rule

The HIPAA Privacy Rule, issued under the Health Insurance Portability and Accountability Act of 1996, has important implications for the confidentiality of adolescent health care. The Rule contains specific requirements that affect medical records and information pertaining to the care of minors (English & Ford, 2004; Weiss, 2003). The HIPAA Privacy Rule provides that, in general, when minors legally consent to health care or can receive it without parental consent, or when a parent has assented to an agreement of confidentiality between the minor and the health care provider, the parent does not necessarily have the right to access the minor’s health information. Who may do so depends upon “state or other applicable law.”

Thus, a health care provider must look to state or other law to determine whether it specifically addresses the confidentiality of a minor’s health information. State or other laws that explicitly require, permit, or prohibit disclosure of information to a parent are controlling. If state or other law is silent on the question of parents’ access, a health care professional exercising professional judgment has discretion to determine whether or not to grant access. The relevant sources of state or other law that a health care provider must consider include the state minor consent laws, state medical privacy laws, the federal confidentiality rules for the federal Title X family planning program, the federal confidentiality rules for drug or alcohol programs, and court cases interpreting both these laws and the constitutional right of privacy.

3.3 Confidentiality Limits

Even when the law protects the confidentiality of adolescents’ health information, legal limits apply, in addition to the clinical and ethical limits that exist. The legal limits include, for example, legal obligations to warn intended victims of homicide and to take protective action in cases of suicidal ideation or attempts, any requirements to notify parents in specific circumstances, and laws granting parents explicit access to minors’ medical records (English, 1990). In addition, the obligation to report child abuse acts as an overall limit on the scope of confidential care, although there are ongoing questions of interpretation regarding the application of child abuse reporting laws to some adolescent health situations, such as consensual sexual behavior of adolescents (Teare & English, 2002). Also, public health laws that require reporting of communicable diseases, including some STIs, place limits on confidentiality, although the public health reporting and contact tracing system has been structured to minimize breaches of confidentiality and to protect privacy as much as possible.

3.4 Confidentiality and Payment

Adolescents often have difficulty obtaining confidential health care unless there is a clear way to pay for the care. Most often, an adolescent’s care is paid for by parents or by health insurance. Alternatively, adolescents may be able to receive certain services without charge or at an affordable cost in a variety of settings such as community or migrant health centers, health departments, school-based and school-linked health clinics, and family planning clinics, among others.

A few of these sites operate under laws that provide confidentiality protection for minors as well as adults. For example, since 1970 the federal Title X Family Planning Program has included strong confidentiality protections for adolescents (English, 2000). In Title X clinics there are sliding fee scales based on income and adolescents are permitted to qualify based on their own (rather than their parents’) income. Eligible adolescents are also entitled to receive confidential family planning services through Medicaid.

Reliance on health insurance coverage for confidential care can be problematic for an adolescent who wants care to be confidential. Particularly in the private health insurance arena, there are numerous ways in which confidentiality can be breached when an adolescent is covered on a family policy, such as through the sending of explanations of benefits (EOBs) to the policyholder who is generally the parent. The effect of the HIPAA Privacy Rule on adolescents’ ability to obtain confidential care through a family insurance policy could be helpful (English & Ford, 2004). For example, the Rule permits individuals, including minors who have consented to their own care, to request specific privacy protections from a health care provider or health plan. A few states have laws that limit disclosure of confidential communications—such as by not requiring the sending of an EOB when there is no remaining financial obligation on the part of the policyholder—but further legal clarification and protection is needed to enable adolescents to seek confidential care and use their health insurance to pay for it.

4 Confidential Adolescent Health Services in Clinical Practice

The importance of confidential adolescent health care, within the context of ethical principles and laws described above, has been explicitly acknowledged by all major health care professional organizations including the American Medical Association, the American Academy of Pediatrics, and the Society for Adolescent Health and Medicine for nearly two decades (Ford et al., 2004; Gans, 1993). Private conversations between adolescent patients and health care professionals are developmentally appropriate as children transition through adolescence into young adulthood, because adolescents need to learn skills to become increasingly responsible for their own health and health care. Private conversations with a health care professional also allow discussion of topics or behaviors that adolescents may not disclose or discuss in the presence of a parent. Research has consistently shown that adolescents’ concerns about privacy can delay or prevent some adolescents from seeking healthcare, and interfere with open patient–physician communication about issues that need to be discussed because they have a major impact on adolescent health—such as sexual behaviors, substance use, and mental health (Boekeloo, Schamus, Cheng, & Simmens, 1996; Cheng, Savageau, Sattler, & DeWitt, 1993; Ford, 2010; Ford, Bearman, & Moody, 1999; Ford, Best, & Miller, 2001; Ford, Millstein, Halpern-Felsher, & Irwin, 1997; Ginsburg et al., 1995; Jackson & Hafemeister, 2001; Jones, Purcell, Singh, & Finer, 2005; Klein, Wilson, McNulty, Kapphahn, & Collins, 1999; Marks, Malizio, Hoch, Brody, & Fisher, 1983; Meehan, Hansen, & Klein, 1997; Nowell & Spruill, 1993; Reddy, Fleming, & Swain, 2002; Sugerman et al., 2000; Thrall et al., 2000; Zabin, Stark, & Emerson, 1991).

Health care professionals are always required to balance competing legal and ethical considerations in providing the best health care for their patients. Providing high quality health care to adolescents for sensitive health concerns within the context of the HIPAA Privacy Rule and against the backdrop of other state and federal laws, including requirements related to health insurance claims, is challenging. Furthermore, most organizations of health care professionals who are involved in the care of adolescents have codes of ethics and organizational policies that address issues of confidentiality in adolescents’ care (Ford et al., 2004; Gans, 1993). These codes and policies often address the importance of protecting confidentiality as well as the importance of helping adolescents and parents understand both the protections and limits of confidentiality.

From a practical standpoint, a clinician providing adolescent health care must understand and implement both the widespread system and clinical operation changes required by the HIPAA Privacy Rule for all clinical settings, regardless of the age of patients served, and the particular aspects of the rule that are significant for adolescents (English & Ford, 2004; Weiss, 2003). Important implications of the HIPAA Privacy Rule that are most pertinent for clinicians who provide health care to adolescents who are unemancipated minors are summarized as follows:

  • Health care professionals must be knowledgeable about state minor consent laws, including any provisions they contain that permit, prohibit, or require disclosure of information to parents.

  • Health care professionals must be knowledgeable about state laws regarding privacy of health information and medical records, including any provisions they contain that permit, prohibit, or require disclosure of information to parents, particularly when minors may legally give their own consent for care.

  • When state minor consent laws, state health privacy and medical records laws, and other laws are silent or unclear on the question of parents’ access to information about care for which minors may legally consent, the HIPAA Privacy Rule makes clear that the covered entity has discretion (that must be exercised by a health care professional) to grant or deny access.

  • Many health care professionals have found, based on their clinical experience, that parents are often willing to agree that their adolescent should be able to receive at least some care on a confidential basis. The HIPAA Privacy Rule grants legal significance to such an agreement, providing that when a parent assents to an agreement of confidentiality between a physician and a minor, the minor assumes the rights of the individual with respect to information and records about the care.

  • The HIPAA Privacy Rule makes it essential to clarify the location and status of information about health care that students receive in school-based health centers. If the information becomes part of a student’s education record, it would likely be covered by the Family Educational Rights and Privacy Act (FERPA ) , not the HIPAA Privacy Rule, and FERPA gives parents access to education records (Law, 2010).

  • Health care professionals must understand the requirements of the federal Title X Family Planning Program and Medicaid , which protect confidential access to family planning services for adolescents who receive them in Title X funded sites or from Medicaid providers.

Clinicians still face challenges concerning how to maintain their records when the parent has rights with respect to some of the information (about routine, nonsensitive services) and the adolescent has rights with respect to other information (about STIs or substance abuse, for example). Such questions may arise less frequently in settings where an adolescent is seen only for “confidential” care, such as in a family planning clinic, but become increasingly complex in offices where adolescents are seen for a variety of issues, such as a private physician’s office or in large institutions with electronic medical records over which individual physicians may have little control.

Further, when third party reimbursement is at stake, the operational challenges of maintaining the appropriate level of confidentiality protection are enormous, even if a minor legally has the rights as an individual under the HIPAA Privacy Rule. Most adolescents are covered by private insurance, but some of them are unwilling or unable to use their insurance coverage for contraceptive services, STI diagnosis and treatment, or other sensitive issues, because they worry that through the billing and insurance claims process their parents will find out. Although the HIPAA Privacy Rule does provide a legal basis for a minor to request that health care providers and health plans restrict disclosure of their protected health information or that they communicate with the minor in a confidential manner, the effective implementation of these provisions requires the willing and active cooperation of both health care providers and third-party payers.

Clinicians continue to face the challenge of conveying the protections and limitations of confidentiality to adolescent patients and their parents. They also still face the challenge of encouraging communication between adolescent patients and their parents in a way that is respectful of both the support parents can provide and the adolescent’s need for privacy. Within this context, practical strategies to support the goal of providing confidential adolescent health care when appropriate in primary care settings are described below.

4.1 Setting the Stage for Confidential Adolescent Health Care

One strategy for creating an environment where confidential adolescent care can be delivered is to set the stage well in advance of when it is most needed. Despite the acknowledged importance of providing opportunities for private adolescent patient–clinician discussions, existing research shows that this does not occur as frequently as one might hope or expect (Edman, Adams, Park, & Irwin, 2010). It is useful to make spending part of each visit privately with adolescent patients a standard part of clinical practice beginning in late childhood or early adolescence.

The American Academy of Pediatrics, Bright Futures, and the American Medical Association recommend explaining the rationale for private time to parents and patients around age 11 (Hagan, Shaw, & Duncan, 2008; Levenberg & Elster, 1995). The rationale for spending part of each visit alone with all adolescents includes that it is developmentally appropriate since young people need to gradually learn to take responsibility for their own health and develop independent patient–clinician relationships over the second decade of life. It is also a time when adolescents can ask the clinician questions about puberty and adolescent health issues that they may not feel comfortable asking other adults. When a clinician has not established a previous relationship with an adolescent patient and family or during episodic care or acute care, it may be useful to explain at the beginning of the visit that standard of care for adolescent patients is that clinicians first talk with the patient and family together, then spend time alone talking to the patient privately and conducting whatever examination needs to be done, and then gathering altogether at the end to discuss clinical impressions and plans. Consistent implementation of these strategies to assure time alone with adolescent patients at each visit can go a long way towards setting the stage for private discussions when needed. Parents often trust clinicians when they convey that time alone with adolescents is standard care, and that the clinicians’ motivation is to help parents assure that their adolescent child’s health needs are met.

4.2 Assurances of Confidentiality

Adolescents who hear assurances about confidentiality are more likely to openly discuss sensitive issues with clinicians and return for future care (Ford et al., 1997). Professional recommendations are to discuss both the protections and limitations of confidentiality (Ford et al., 2004; Gans, 1993). Adolescents are more likely to understand what clinicians are trying to convey when clinicians are very specific about what can and cannot be managed confidentially. Previous research suggests that it is particularly important to emphasize the protections of confidentiality, because adolescents are less aware of the protections of confidentiality than of the limitations (Ford, Thomsen, & Compton, 2001). When limitations to confidentiality are explained, clinicians should consider explaining the limits of confidentiality within the context of caring rather than the law. One example of an assurance of confidentiality that includes specific language addressing both protections and limitations, emphasizes protections, frames limitations within the context of caring for the patient, and acknowledges that clinicians may encourage communication with parents is as follows:

You should know that there are many things I can keep confidential, like if you were having sex, getting birth control, getting tested or treated for STIs, using drugs, or having emotional problems. Some things I can’t keep private, like if you are thinking about killing yourself or someone else or if you are being abused. Those are really serious things so if they are going on I hope you would tell me so we can make sure you get some help, and you and I would discuss the best way to get others involved. The main point I am trying to make is that we can handle most things privately. I may encourage you to talk to your parents, but that would be up to you. Any questions?

In addition to discussing confidentiality, adolescents report that it is important for clinicians to behave in a trustworthy manner, and that it may be useful to supplement discussions with information in written clinic materials.

4.3 Encouraging Parental Involvement Without Losing Adolescents’ Trust

Experienced clinicians can often find a way to provide care that respects teens’ desire for privacy, is consistent with legal/ethical guidelines, and appropriately involves parents or other responsible adults. Clinicians can give parents clear messages that they should talk to teens about health related issues, and can educate parents and teens about the spectrum of issues they should be discussing. Linking adolescent behaviors to potential health issues helps parents understand the importance of encouraging health promoting behaviors and minimizing risk-associated behaviors. At the end of a clinic visit, clinicians can develop strategies to tailor general counseling to parents and encourage parent–teen communication about behaviors that are currently salient to their adolescent, without betraying specific information the adolescent has disclosed during the visit. For example, if the adolescent patient has disclosed privately that they have been attending parties where alcohol is consumed, the clinician can incorporate general counseling about safety and alcohol use into discussions of anticipatory guidance when the parent and teen are together at the end of the appointment. After explaining that there are several general issues that clinicians discuss with all parents of adolescents their child’s age, the clinician can choose to discuss the importance of all families developing an emergency rescue plan that allows a teen to call a parent or other responsible adult and use code words to relay the message that they need to be picked up (e.g., rather than getting into a car with a drunk driver).

There will be circumstances when a clinician’s professional opinion is that an adolescent patient needs to have a responsible adult involved in their healthcare, or when clinicians are required by law to break confidentiality. In these situations, it is important to explain to the patient why the clinician thinks it is important to involve a responsible adult. It may be more useful for explanations to be framed within the context of caring and concern about the adolescent patient, rather than legal requirements. Many teens will understand that having a responsible adult (typically a parent) know what is going on will be helpful. Clinicians can discuss with adolescent patients which responsible adult in their life would be the best to involve, the pros and cons of involving a parent, help adolescents reflect on how parents have handled difficult situations in the past, and offer to facilitate discussions with the responsible adult (e.g., Would you like me to tell your mother privately or would you prefer for all of us to be together? If we are together, do you want me to tell your mother, or do you prefer to tell her and I can be here for support?)

4.4 Billing

It is important to realize that clinical care generates billing and insurance claims information that will likely be sent to parents (English, Gold, Nash, & Levine, 2012). This can result in unintentional disclosure of confidential adolescent health information. For example, if a bill or EOB sent home itemizes testing, the parent may see that the adolescent received a pregnancy test or STI test within the context of a confidential visit. It is important for clinicians to understand the billing system within the clinic or institution in which they work so that they can be aware of and minimize this risk.

Private insurance companies often generate documents related to claims, such as an EOB, or other notices; in this situation it may be feasible to negotiate with an adolescent patient a strategy for letting parents know what may show up on the bill (e.g., STI testing is a routine part of evaluation for dysmenorrhea in all females). It is also important to work with insurers on strategies to avoid listing sensitive health information in bills and EOBs (English et al., 2012). Medicaid may or may not generate a bill or EOB sent to homes, so it is important to learn typical local procedures. Title X Family Planning clinics, Planned Parenthood clinics, health departments, and some specialized clinics generally do not generate bills and are the locations where adolescents should be referred if they cannot receive needed confidential services in other settings. However, some family planning clinics and other safety net providers are beginning to file insurance claims for patients who are covered by insurance, so confidentiality issues may arise even in those settings.

4.5 Release of Medical Information

Adolescents usually should be able to control release of medical records for healthcare to which they have consented (English & Ford, 2004). Policies and procedures to implement this have typically involved segregating adolescent-controlled confidential information in the medical records so that record custodians understand that the minor (rather than the parent) needs to consent before release. Alternatively, clinicians have reviewed and summarized pertinent data to be released, based on whether or not the minor has consented to release. Release of medical information to insurance companies and third-party payers raises separate issues as previously discussed.

4.6 Electronic Medical Records

New risks for unintentional disclosure of confidential adolescent health information have emerged with implementation of electronic medical records (EMRs ). Strategies used to control access to information in paper charts housed in one location are no longer effective. As health systems using EMRs continually expand and become more integrated, privacy of health information for adolescents and adults becomes more challenging. These challenges influence the ability to protect generally sensitive health information as well as legally protected sensitive health information.

Sensitive health information may be automatically integrated across general EMRs. For example, EMR problem lists may contain sensitive diagnoses (e.g., STIs, HIV, mental illness, genetic disorders), EMRs may provide access to all lab test results (e.g., pregnancy, STI, drug, and genetic testing), and EMR medication lists may contain those prescribed for sensitive health issues (e.g., STIs, HIV, contraception). The content of visits in multiple clinic settings (primary care, emergency rooms, STI/HIV clinics, family planning clinics, mental health clinics) may include sensitive information and be visible across the institution; similar concerns arise with visibility of the content of telephone calls and certain types of clinic appointments. Automatically generated After Visit Summaries (AVS) and discharge summaries may contain sensitive information, and clinicians may not be able to edit them before they are distributed to parents. Patient portals also present unique issues for parents and minor adolescent patients.

As a result of these changes, a much wider range of clinicians within clinics and institutions will likely have access to sensitive adolescent health information integrated into adolescent patient EMRs. These clinicians may be unfamiliar with the legal protections that minors have for confidential adolescent health care, or lack the fundamental knowledge and/or skills to appropriately manage sensitive adolescent health information. Health information exchange between institutions will only intensify these challenges. Furthermore, there will be more opportunities for providers to unintentionally disclose confidential adolescent health information to parents during routine healthcare. For example, unintentional disclosure may happen if parents view EMR computer screens, problem lists, or medication lists during clinic visits; receive automatically printed AVS or discharge summaries that contain sensitive information; or have open access to adolescent patient portals with health information that should be controlled by the adolescent.

Processes to protect minor-controlled release of information from EMRs are complex, and have not been adequately addressed among current EMR vendors (Anoshiravani, Gaskin, Groshek, Kuelbs, & Longhurst, 2012; Blythe & Del Beccaro, 2012).

5 Special Populations

Confidential adolescent health services for several special populations of adolescents warrant further discussion because of their unique circumstances. These groups include youth in foster care and in juvenile justice settings, homeless youth, those at risk or infected with HIV, and those receiving care in military systems.

5.1 Youth in Foster Care

In 2011, an estimated total of 400,000 children and adolescents were in foster care in the United States (Administration for Children and Families, 2012). Of these, slightly more than an estimated 150,000 were ages 12–20. A significant number were in the older adolescent/young adult age group: 60,000 were age 16 or 17 and nearly 17,000 were ages 18–20. Slightly more than half of the total population was male. These youth are in a variety of placements including foster family homes (with relatives or unrelated families), pre-adoptive homes, group homes, institutions, and supervised independent living; the vast majority are in foster family homes. Youth in foster care are disproportionately from racial and ethnic minority groups, with 27 % of the total Black and 21 % Hispanic. The turnover in the foster care population is high, with approximately 250,000 entering care in 2011 and almost as many leaving in the same year.

Youth in and aging out of foster care experience physical and mental health problems at rates significantly higher than the general population (Childhood, 2012). About 30–40 % have mental health problems and more than one-third have a chronic illness or disability. Some of their health problems are directly related to factors leading to their placement in foster care, such as physical or sexual abuse, while others arise during placement. Adolescents in foster care often encounter significant problems gaining access to health care, and frequently lack access to health care providers experienced in caring for a population with their particular needs. While in foster care, most adolescents are eligible for Medicaid. Once they age out, however, the picture can change significantly, with studies finding that only about one half of foster youth had health insurance when they exited care. Beginning in 2014, as a result of the Affordable Care Act, all states will be required to provide Medicaid coverage for youth aging out of foster care until the age of 26, although outreach and enrollment challenges will remain for this vulnerable population (English & Park, 2012).

Many health concerns of youth in foster care are related to reproductive and sexual health, substance abuse, and mental health that give rise to the need for confidentiality protection. Maintaining confidentiality protection for youth in foster care entails significant challenges. As previously discussed, the relationship between consent and confidentiality is not straightforward, and for the foster care population is even more complex. State law determines who may or must consent for health care for a child or adolescent in foster care. Generally, unless parental rights have been terminated, consent may be given by the adolescent’s parents, the court, or, if state law allows, the child welfare agency or caseworker. To the extent that state law authorizes an adolescent to consent for his or her own care, based on status or services being sought, an adolescent in foster care should also be able to do so.

Clarity is lacking, however, about the extent to which an adolescent in foster care who is consenting for his or her own care—such as for reproductive, substance abuse, or mental health care—can expect the care to be confidential. It is unclear when foster parents or the child welfare agency might have access to the information. Some child welfare agencies have policies stating that health care information about a foster child or adolescent should be available to them, and this policy is generally intended to facilitate appropriate health care for youth in foster care. When sensitive services are involved, however, such access can limit an adolescent’s willingness to use care or the quality of the care they receive. The American Academy of Pediatrics has suggested that health care professionals taking care of adolescents in foster care should assume that minors with the capacity to consent have the right to confidentiality for issues related to family planning and reproduction, STIs, and substance abuse and that the information should not be shared with caseworkers, foster parents, or birth parents without the adolescent’s consent (Task Force on Health Care for Children in Foster Care, 2005). Clinicians must be familiar with their state consent and confidentiality laws and any specific laws or policies related to the foster care population.

5.2 Youth in Juvenile Justice Settings

On a single date in 2008, a census indicated that approximately 80,000 juvenile offenders were held in public or private residential placements in the United States (Sickmund, 2010), although significantly higher numbers moved through such placements during a one-year period. These youth include both juvenile delinquents who have committed offenses that would be crimes for adults as well as status offenders who have committed offenses “for children only,” such as school truancy or running away from home. The types of facilities in which they are placed include: secure and nonsecure; public (state or local), private, and tribal; and long-term and short-term holding facilities. Out-of-home placements include detention centers, juvenile halls, shelters, reception and diagnostic centers, group homes, wilderness camps, ranches, farms, youth development centers, residential treatment centers, training or reform schools, and juvenile correctional institutions.

The number of juveniles in residential placement is small in comparison to the 11 million juveniles who were arrested in 2008 (US Department of Justice, 2009), or to the more than 31 million youth who were under juvenile court jurisdiction in 2009, but not necessarily in residential placement (Puzzanchera, Adams, & Hockenberry, 2012). Racial and ethnic minority youth are disproportionately represented both among those who are arrested and those who are in custodial placements. Also in 2009, juvenile courts handled an estimated 1.5 million juvenile delinquency cases. More than 300,000 youth arrested for delinquency offenses were detained in 2009, while more than 130,000 of the adjudicated cases resulted in a disposition of out-of-home placement. More than one fourth of these cases (28 %) involved physical or sexual assaults or other violent offenses against persons, 33 % involved property offenses, and 9 % involved drug offenses.

Youth in juvenile justice settings experience significant health problems and encounter limitations in access to health care appropriate to address those problems. Youth in juvenile justice settings have health problems in the same broad categories as their counterparts in the community, but are at higher risk of mental health problems, suicide, substance abuse disorders, injuries associated with violence, and negative consequences of sexual behaviors (Adolescence, 2011). Youth placed in juvenile justice settings, both short-term detention and longer term correctional placements, receive health care of widely varying quality, even though the National Center on Correctional Health Care has detailed standards for the provision of health care in juvenile facilities (Care, 2011). These standards contain recommendations for screening, diagnosis, and treatment of sensitive health issues that trigger confidentiality concerns.

Health care for youth in juvenile justice settings raises complex issues related to confidentiality. The confidentiality concerns are important for several reasons: because so many of the health issues experienced by youth in these settings involve sensitive sexual behaviors, substance use, and mental health; because the settings vary so widely in terms of their structure, configuration, and management; and because there is a tension between the legitimate concerns of safety and privacy. Mental health professionals treating adolescents in juvenile justice settings need to be sensitive to confidentiality concerns and to the potential for role conflicts (Psychiatry, 2005). Taking care to avoid exploration of details of the youth’s offense may be essential to avoiding conflicts over reporting and disclosure mandates. A youth who is receiving health care in a juvenile justice setting should not lose the consent and confidentiality protections available to them in the community according to their state’s laws. Thus, a minor who is able to consent for confidential STI testing in the community should be able to do so in a juvenile justice setting. However, the policies and guidelines of specific agencies and institutions vary widely. It is essential for health care professionals providing care for youth in these settings to be familiar with both their state laws and local or institutional policies and guidelines.

5.3 Homeless Youth

The total number of adolescents who are homeless in the United States is difficult to estimate, and existing estimates vary widely. One estimate suggests that there are nearly 1.7 million homeless youth under age 18; approximately 380,000 of these remain homeless for more than one week and about 130,000 remain homeless for more than one month, with the remainder returning home quickly (Homelessness). Substantial variations exist among those who remain homeless for more than 1 week; some are “low-risk” and “transient” youth who retain relationships with their families while others are “high-risk” youth who have highly unstable or nonexistent family ties. The factors contributing to homelessness among adolescents include sexual orientation other than heterosexual, history of foster care placement, and school expulsion. The number of homeless young adults ages 18–24 is even more difficult to estimate and reliable estimates are not available, although these young people share many characteristics and health care needs with their younger counterparts.

Homeless youth have numerous health problems and extensive health care needs, which are insufficiently met (Pediatrics, 2013; Toro, Dworsky, & Fowler, 2007). The health problems they experience are similar to those affecting youth in foster care and juvenile justice settings. These problems are exacerbated by their living conditions, with limited sanitation and exposure to the elements. Also, homeless youth are at increased risk for being sexually exploited and trafficked, with the associated risk for physical injuries, substance abuse, mental health trauma, and sexual health problems.

Confidentiality issues for homeless youth vary in important ways from the confidentiality issues affecting youth in foster care or juvenile justice settings (Halley & English, 2009). This is because homeless youth are generally not in the custody or under the control of a child welfare or juvenile justice agency or institution, and are less likely than youth in the community to have parents insisting on access to information about health care they may have received for sensitive issues. Homeless youth who are age 18 or older are legally adults and are generally able to give consent for their own care on the same basis as other adults. They are also entitled to the same legal protections of confidentiality as other adults. However, homeless or unaccompanied youth who are under age 18 are legally minors. They may or may not be able to give their own consent for care, depending on specific provisions of state and federal law and the services they are seeking. Of particular importance for homeless youth, slightly less than one half of states have enacted statutes that enable minors who are living apart from their parents to consent for their own health care. Homeless youth under age 18 should be entitled to the same confidentiality protections as adolescent minors in the community, depending on their specific status and the services they are seeking. Health care professionals caring for homeless youth should be familiar with their state’s consent and confidentiality laws.

5.4 Youth Living with and At-Risk for HIV/AIDS

Currently, there are approximately 1.2 million people in the United States living with HIV/AIDS and over 50,000 new infections occur each year (CDC, 2010b). Since the beginning of the epidemic nearly 40,000 adolescents have been diagnosed with HIV in the USA and an estimated 39 % of all new infections occur among young people ages 13–29, even though they represent only approximately 21 % of the total population (CDC, 2010b). According to recent Center for Disease Control and Prevention (CDC) estimates there are over 25,000 individuals 13–24 years of age living with HIV in the USA (CDC, 2010a).

The demographics of young people living with HIV/AIDS in the USA have changed during the last three decades. A combination of public health interventions has dramatically reduced the incidence of perinatal HIV infections. From 1998 to 2005, there have been less than 150 infected infants identified each year (CDC, 2007b). At the same time, with the advent of combination anti-retroviral therapy many youth with perinatally acquired HIV are now surviving into adulthood. Such longevity was never expected in the beginning of the epidemic and these perinatally infected teens now comprise almost one-third of adolescents living with HIV/AIDS (CDC, 2007a). This increase in the population of perinatally infected teenagers has been mirrored by an increasing incidence in behaviorally infected adolescents, primarily in those infected through sexual contact. At this time, the majority of newly infected adolescents are young men who have sex with men (YMSM), with Latino and particularly Black YMSM being disproportionately affected (CDC, 2010b). Male-to-female (MTF) transgender youth also have a particularly high incidence of HIV infection (Garofalo, Deleon, Osmer, Doll, & Harper, 2006). According to the most recent CDC data, among youth ages 13–19, the highest rates of new infection are in the South and Southeastern regions of the USA (CDC, 2010a). Finally, heterosexual transmission of HIV accounts for about 30 % of the cases in this age group with the overwhelming majority of patients being young Black and Hispanic/Latina women (CDC, 2010b; Garofalo et al., 2006). In addition to those living with HIV/AIDS, many young people are at risk for acquiring HIV infection, due to high rates of unprotected sex, presence of other STIs, substance abuse, and lack of awareness or education (CDC, 2007).

In general, youth living with and at-risk for HIV/AIDS have poor access to appropriate healthcare. According to the CDC, less than a quarter of all young people who reported being sexually active had ever been tested for HIV, despite recommendations for routine screening of sexually active adolescents and adults (Balaji et al., 2012; Branson et al., 2006). Additionally, it is estimated that approximately 60 % of youth living with HIV do not know their diagnosis (Centers for Disease Control and Prevention & Vital Signs, November 2012). Among people who have tested positive for HIV, data show that youth and particularly YMSM of color are less likely to engage in routine medical care than their adult counterparts.

Many people living with or at-risk for HIV/AIDS continue to experience stigma, both perceived and enacted, due to their HIV status and/or minority sexual orientation or gender identity (Dowshen, Binns, & Garofalo, 2009). It is within this context that confidentiality protections are particularly important. Many youth with HIV face isolation due to lack of community and family support if their infection status is known, and concerns about privacy are often cited as a barrier for not seeking healthcare. Furthermore, concerns about privacy can influence HIV testing. While adolescents can consent to care for STI testing and treatment in all 50 states, only 31 states explicitly include HIV testing and treatment, 18 states allow physicians to inform a minor’s parents that he or she is receiving STI services, and 1 state requires parental notification of a minor’s positive HIV test result (Guttmacher Institute, 2013). Additionally, state laws vary as to how HIV-related information must be treated and released to family members and other healthcare providers. Even when providers aim to protect confidentiality for adolescents and young adults regarding HIV testing or treatment, inadvertent disclosures often may occur due to insurance related issues including denial, acknowledgement, or payment of claims or EOBs to the primary beneficiary of the insurance plan (English et al., 2012). Such disclosures can have devastating consequences for youth living with and at-risk for HIV including violence or loss of stable housing. Of note, the recent success of preexposure prophylaxis (daily oral tenofivir/emtricitabine) as a promising biomedical HIV prevention strategy among YMSM and serodiscordant heterosexual couples has led to discussions of minor’s right to consent and receive confidential care for this treatment (Culp & Caucci, 2013).

5.5 Military Adolescents and Young Adults

Adolescents and young adults associated with the US Armed Forces include two unique groups. The first group includes young military service members. The second group includes family members of military service members (e.g., children, spouses), also referred to as military dependents. During 2012, the total number of young people age 15–25, including both dependents and young military service members age 18–25, who were affiliated with the military medical system either through seeing military medical providers or having their healthcare paid for by Tricare (the organization responsible for funding healthcare for military personnel and their dependents), was approximately 1.63 million (Evaluation of the TRICARE Program: Fiscal Year 2012 Report to Congress, 2012). A separate report in 2011 showed there were approximately 642,000 young people between the ages of 12 and 23 who were dependents of military personnel, including both children and spouses (2011 Demographics: Profile of the Military Community, 2012). While many of these young people receive health care in military treatment facilities (MTFs), an increasing number are served in civilian practices around the USA; from 2008 to 2010 the percent of military dependents with a civilian primary care provider increased from 39 to 48 % (Evaluation of the TRICARE Program: Fiscal Year 2012 Report to Congress, 2012). While military personnel are primarily cared for at MTFs, they may be referred to civilian providers for specialty services and care that is not available at their MTF. Accordingly, it is imperative that healthcare providers, both military and civilian, have an understanding of some of the unique issues surrounding confidentiality for young people affiliated with the US military.

When we see images of soldiers, sailors, and marines, we rarely associate the word “adolescent” with them. However, when we recognize that 43.2 % (610,274) of all active duty military personnel and 33.5 % (286,797) of military reservists are under the age of 25, it is apparent that meeting the healthcare needs of this population of young adults is critical (2011 Demographics: Profile of the Military Community, 2012). The primary policy statement that guides issues related to confidentiality regarding their health information is Department of Defense (DoD) 6025.18-R (Department of Defense Health Information Privacy Regulation, 2003). In this statement, all of the rules related to the protection of military service members’ health information are the same as their civilian counterparts, with a caveat. Under DoD 6025.18-R, and policy directives from the Army, Navy, and Air Force, military commands can request an individual service member’s medical records without his or her consent in a select circumstance—ensuring the ability of the command to fulfill its mission (Air Force Instruction 41-210, 2000; Department of Defense Health Information Privacy Regulation, 2003; Lenhart, Ling, Campbell, & Purcell, 2010; MARADMIN 308/11, 2011). To do this requires that the commanding officer determine the service member’s health information is required for assessing and maintaining the health and readiness of the military command for carrying out its mission, or determining whether the particular military service member is fit for his or her duty or assignment. In this situation, the commanding officer must request the medical records in writing, with a specification of the information required and a justification for requiring it. Whether this information is requested from an MTF or civilian institution, the health care provider is to supply the minimum amount of information required to meet the specified needs of the command. A military service member has the right to request an accounting of what information was requested and given, and why this was done (Rushenberg, 2007). For assistance with these and other issues that arise with confidentiality concerns, military service members should be referred to the legal office of their commands or the privacy office at their MTFs.

The adolescent children of military parents and the civilian spouses of young service members are much more likely to see a civilian health care provider than military service members. As noted above, 48 % of military dependents have a civilian primary care provider, while this is true of less than 4 % of military service members (Evaluation of the TRICARE Program: Fiscal Year 2012 Report to Congress, 2012). For adolescents and young adults cared for by civilian providers in civilian institutions, the regulations and policies surrounding their confidentiality are the same as for any other adolescent or young adult in that practice. For the military dependents cared for in MTFs, the regulations of HIPAA and state laws regarding confidentiality are also in full effect, and some of the military services (like the Army) explicitly state in their regulations that 15–17-year-old dependents should have private medical records (Air Force Instruction 33-332 Communications and Information Air Force Privacy Program, 2011; English, Ford, & Santelli, 2009; Manual of the Medical Department of the Navy, NAVMED P-117, 2013). However, similar to the civilian sector, the practical application of these regulations and directives is more complicated. Because of the transient nature of this population, who frequently moving from military base to military base, and from the USA to overseas and back, the risk of losing paper records in transfer from one treatment center to another is a real concern. In the past, to help circumvent this problem, military service members could request the records of his or her dependents allowing the service members to hand carry these records between duty stations to facilitate the transition and prevent the loss of records. The ability to have records available upon arrival at a new location is vitally important in many situations, particularly for young people who have ongoing healthcare needs. However, this often meant that adolescent and young adults have no foolproof means of guaranteeing their records are completely confidential, even when MTFs are directed to provide this confidentiality. To ameliorate some of these concerns, TRICARE along with the medical departments of the branches of the US Military has updated their policies regarding dependents medical records, now requiring signed release of information documentation prior to the release or transfer of medical records for adult dependents (Evaluation of the TRICARE Program: Fiscal Year 2012 Report to Congress, 2012; “TRICARE Management Activity,” 2013). Similar to many sectors of the civilian medical system, it remains relatively easy for a service member to access his or her dependents’ medical records. However, TRICARE in coordination with MTFs is actively working on improving ways to maintain confidentiality and facilitate record transfer through the use of nationally integrated EMR systems with increased protections around sensitive topics (Evaluation of the TRICARE Program: Fiscal Year 2012 Report to Congress, 2012).

6 Conclusion

Adolescents should have access to developmentally appropriate high quality confidential health care within professional, ethical, and legal guidelines. Clinicians and health care systems who provide this care have a higher likelihood of being able to effectively address the types of sensitive health issues linked to major causes of morbidity and mortality in this age group. Strategies to facilitate the ability to provide confidential adolescent healthcare include explaining its importance to parents and adolescents, routinely spending part of each adolescent visit alone with the patient, discussing confidentiality, and addressing issues that increase risk of unintentional disclosure of protected information related to billing, EOBs, release of health records, and EMRs. Clinicians need to become familiar with federal and state laws that influence practice and policies in their specific setting, and how to provide health care within this context to adolescent patients during routine and acute care.

NOTE: The opinions expressed in this chapter are those of the individual authors, and do not necessarily reflect the opinion or policy of the US Department of Defense.