See Related Article on p.242
[1]
].A recent study by Jennifer Wiebelhaus et al. [
[2]
] explored the perspectives of adolescents and parents about parental notification after an adolescent discloses ARA to a healthcare provider. The types of abuse in their study were physical, cyber, psychological, and sexual ARA; reproductive coercion; controlling behavior; and feeling unsafe. As Wiebelhaus et al. [[2]
] explain, ARA is multifaceted and complex. It includes some behaviors that are criminal, others that are legally considered child abuse, and many that are associated with serious short- and long-term adverse physical and psychological outcomes [[3]
]. For this reason, along with appropriate health care, adult support may be needed by a young person experiencing ARA.A healthcare provider treating an adolescent who discloses ARA must address not only the immediate concern of what health care is needed but also a range of legal and ethical questions: Is the adolescent willing to disclose the ARA to a parent or other trusted adult? Does the adolescent insist that confidentiality protection is essential? Is the adolescent in continuing danger? Is the ARA experienced by the adolescent reportable as child abuse? Do legal requirements and ethical principles require, permit, or preclude disclosure? Are there ways that the ARA may be inadvertently disclosed? These questions require understanding the importance of confidentiality in adolescent health care, the significance of child abuse reporting and other disclosure mechanisms, the role of parents and other trusted adults, and evolving confidentiality challenges.
The Role of Confidentiality
Long-standing legal protections and ethical principles have provided some assurance to adolescents that when they disclose sensitive information to their healthcare provider, that information will not be disclosed without their agreement. These protections increase the likelihood that young people will receive needed care because privacy concerns influence whether, where, and when adolescents seek care and what they disclose when they do so [
[4]
]. Past research on the role of confidentiality in adolescent care often has focused on sexual health–related services [[5]
,[6]
]. Clearly, some adolescents will be discouraged from seeking care, will delay doing so, or will withhold important information if their privacy will be compromised [[7]
,[8]
]. Nevertheless, limits to confidentiality exist when the adolescent is at risk for hurting themself or others or when disclosure is required by law [[4]
]. The primary principles underlying these exceptions are protection of health and safety.Disclosure Requirements
Confidentiality protection is essential but not absolute. Overriding it may be necessary to comply with legal requirements or in situations where the health or safety of an adolescent patient is at stake. At the same time, breaching confidentiality may not be permissible unless there is a law that requires or allows disclosure. Such laws include child abuse reporting laws as well as provisions in some states' minor consent and federal or state medical privacy laws.
Every state has a child abuse reporting law and most healthcare professionals are mandated reporters who are required to disclose to child protective services or law enforcement otherwise confidential information. [
[9]
,Child Welfare Information Gateway
State Statutes Search.
State Statutes Search.
https://www.childwelfare.gov/systemwide/laws_policies/state
Date accessed: March 17, 2021
[10]
] Child abuse requirements generally apply to minors younger than the age of 18 years, although the age for reporting specific forms of abuse varies among states. [Reproductive Health National Training Center
Mandatory child abuse reporting state Summaries.
Mandatory child abuse reporting state Summaries.
https://rhntc.org/resources/mandatory-child-abuse-reporting-state-summaries
Date accessed: March 17, 2021
[9]
,Child Welfare Information Gateway
State Statutes Search.
State Statutes Search.
https://www.childwelfare.gov/systemwide/laws_policies/state
Date accessed: March 17, 2021
[10]
] The scope of child abuse reporting laws is specific and often does not include many forms of ARA [Reproductive Health National Training Center
Mandatory child abuse reporting state Summaries.
Mandatory child abuse reporting state Summaries.
https://rhntc.org/resources/mandatory-child-abuse-reporting-state-summaries
Date accessed: March 17, 2021
[9]
,Child Welfare Information Gateway
State Statutes Search.
State Statutes Search.
https://www.childwelfare.gov/systemwide/laws_policies/state
Date accessed: March 17, 2021
[10]
]. Similarly, some state minor consent laws require or permit disclosure of confidential information about care, while others disallow it without the permission of the minor [Reproductive Health National Training Center
Mandatory child abuse reporting state Summaries.
Mandatory child abuse reporting state Summaries.
https://rhntc.org/resources/mandatory-child-abuse-reporting-state-summaries
Date accessed: March 17, 2021
[11]
]. Under the state law, when a minor is allowed to consent to their own care based on their status or the services they are seeking, the confidentiality of information about that care often is protected. Special considerations are needed when an adolescent is cognitively impaired and not able to provide consent for their own care. Even so, if the health of the minor is threatened, some of these laws either require the healthcare provider to disclose the information to a parent or grant the provider discretion to do so [[11]
].Beyond Mandatory Reporting and Disclosure
In the context of ARA, many areas of uncertainty exist owing to the scope of child abuse reporting mandates and the patchwork nature of confidentiality protections in state minor consent and federal and state medical privacy laws [
9
, Child Welfare Information Gateway
State Statutes Search.
State Statutes Search.
https://www.childwelfare.gov/systemwide/laws_policies/state
Date accessed: March 17, 2021
10
, Reproductive Health National Training Center
Mandatory child abuse reporting state Summaries.
Mandatory child abuse reporting state Summaries.
https://rhntc.org/resources/mandatory-child-abuse-reporting-state-summaries
Date accessed: March 17, 2021
11
, 12
]. Although expanding the scope of child abuse reporting laws to include more forms of ARA is an option, it is far from ideal: child protective services are already overwhelmed and challenged in dealing with abuse of both younger children and adolescents. Moreover, child abuse reporting mandates create ethical dilemmas by requiring healthcare providers to breach confidentiality. To ensure that adolescents victimized by ARA receive the support they need, one strategy for addressing this uncertainty may be to focus greater attention—beyond child abuse reporting or parental notification—on helping the young person voluntarily involve other trusted adults. Focusing on voluntary engagement with trusted adults could enhance protective options for adolescents and minimize ethical dilemmas for healthcare providers.While some adolescents require confidentiality protection to seek care, others voluntarily share information with their parents, do not object to disclosure, or disclose with the help of their healthcare provider [
[6]
,[13]
]. The support of a parent or another trusted adult is especially important when an adolescent is experiencing harmful interactions such as ARA. Noteworthy in the study by Weibelhaus et al. is that even though a majority of both adolescents and parents did find parental notification acceptable, adolescents who were most at risk were the least likely to find it acceptable: adolescents with prior sexual activity or prior ARA victimization or those in current dating relationships [[2]
]. Unfortunately, although most adolescents have supportive parents, not all do and, among the parents reported in the study by Wiebelhaus et al., 35% of the participating parents had themselves experienced intimate partner violence, which might complicate their capacity to support a victimized adolescent child [[2]
]. Consideration of alternatives to parental notification may be necessary to ensure that adolescents experiencing ARA victimization have the support they need to navigate a difficult situation with potentially long-term adverse effects on their health and well-being.Evolving Confidentiality Challenges
Any strategy to improve support for adolescents experiencing ARA must consider evolving confidentiality challenges. The question of confidentiality protection in adolescent health care is not a binary one: will the information be protected or disclosed? Rather, it involves the interaction of an increasingly complex web of health information technology systems, digital health apps, electronic health information, and legal requirements. Each of these has its own implications for the confidentiality of adolescents' health information [
14
, 15
, 16
]. A salient example is the recent regulation issued by the Office of National Coordinator for Health Information Technology to implement the 21st Century Cures Act (ONC Rule) [[17]
,21st Century Cures Act: Interoperability, information Blocking, and the ONC health IT Certification Program, 85 fed. Reg. 25642, May 1, 2020.
https://www.govinfo.gov/content/pkg/FR-2020-05-01/pdf/2020-07419.pdf
Date accessed: April 5, 2021
[18]
]. The ONC Rule will have a major impact on adolescent confidentiality by requiring that clinical notes be shared with patients and sometimes with their parents directly or as proxies, usually via Web portals, which could inadvertently result in disclosure of ARA and other sensitive information [Office of National Coordinator for Health Information Technology
ONC Cures Act final Rule.
ONC Cures Act final Rule.
https://www.healthit.gov/curesrule/overview/about-oncs-cures-act-final-rule
Date accessed: April 5, 2021
[19]
,[20]
]. Against this broad backdrop, the preferences and behaviors of adolescents with respect to privacy protection and disclosure of their confidential information are evolving as well. Wiebelhaus et al. have presented important findings about the current perspectives of adolescents and parents regarding a particularly troubling dimension of adolescent relationships—the myriad forms of abuse that all too often characterize their interactions.References
- Prevalence and correlates of dating violence in a national sample of adolescents.J Am Acad Child Adolesc Psych. 2008; 47: 755-762
- Adolescent and parent perspectives on confidentiality after adolescent relationship abuse disclosure.J Adolesc Health. 2021; 69: 242-247
- Longitudinal associations between teen dating violence victimization and adverse health outcomes.Pediatrics. 2013; 131: 71-78
- Confidential health care for adolescents: Position paper of the Society for adolescent medicine.J Adolesc Health. 2004; 35: 160-167
- Effect of mandatory parental notification on adolescent girls' use of sexual health care services.JAMA. 2002; 288: 710-714
- Adolescents' reports of parental knowledge of adolescents' use of sexual health services and their reactions to mandated parental notification for prescription contraception.JAMA. 2005; 293: 340-348
- Foregone health care among adolescents.JAMA. 1999; 282: 2227-2234
- Influence of physician confidentiality assurances on adolescents’ willingness to disclose information and seek future health care: A randomized controlled trial.JAMA. 1997; 278: 1029-1034
- State Statutes Search.(Available at:)https://www.childwelfare.gov/systemwide/laws_policies/stateDate accessed: March 17, 2021
- Mandatory child abuse reporting state Summaries.(Available at:)https://rhntc.org/resources/mandatory-child-abuse-reporting-state-summariesDate accessed: March 17, 2021
- State minor consent laws: A summary.3rd edition. Center for Adolescent Health & the Law, Chapel Hill, NC2010
- The HIPAA Privacy Rule and adolescents: Legal questions and clinical challenges.Persp Sex. Reprod Health. 2004; 36: 80-86
- Parent and adolescent attitudes towards preventive care and confidentiality.J Adolesc Health. 2019; 64: 235-241
- Policy statement for health information technology to ensure adolescent privacy.Pediatrics. 2012; 130: 987-990
- Special requirements for electronic medical records in adolescent medicine.J Adolesc Health. 2012; 51: 409-414
- Recommendations for electronic health record use for delivery of adolescent health care: Position paper of the Society for Adolescent Health and Medicine.J Adolesc Health. 2014; 54: 487-490
- 21st Century Cures Act: Interoperability, information Blocking, and the ONC health IT Certification Program, 85 fed. Reg. 25642, May 1, 2020.(Available at:)https://www.govinfo.gov/content/pkg/FR-2020-05-01/pdf/2020-07419.pdfDate accessed: April 5, 2021
- ONC Cures Act final Rule.https://www.healthit.gov/curesrule/overview/about-oncs-cures-act-final-ruleDate accessed: April 5, 2021
- NASPAG/SAHM statement: The 21st Century Cures Act and adolescent confidentiality.J Adolesc Health. 2021; 68: 426-428
- Implications of the 21st Century Cures Act in Pediatrics.Pediatrics. 2021; 147e2020034199
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