Uphold Consent and Confidentiality

We help clarify various laws and policy, advocate for youth’s sensitive health privacy rights, and help youth, families and service providers navigate complicated conversations around consent, confidentiality and information sharing.

Youth and families list concerns about confidentiality as the number one reason they might forgo medical care. Without the promise of confidentiality, young people may avoid critical health care for sensitive services or provide incomplete information to health care providers. Decades of research has confirmed that concerns about privacy can prevent many adolescents from seeking health care. 

The desire for privacy is a normal part of healthy development 

During adolescence, youth confront new issues that affect their physical, reproductive, and mental health. As they face these changes, teens crave increased privacy and opportunities to make health-related decisions. This is a normal part of healthy development that, if well-supported by involved parents and other adult caregivers and clinicians, can provide an important opportunity for maturation and independence. 

NCYL provides tools, trainings, and resources to youth, families and service providers to help them navigate youth’s growing desire for increased privacy, which can feel uncomfortable for care partners and providers. We show them when and how they can share health information appropriately while still honoring and centering young people and their families. We also help youth understand and advocate for their own consent and confidentiality rights.  

Striking a balance: Appropriate information sharing that centers youth 

In some cases, systems, such as education, child welfare or juvenile justice, are responsible for ensuring the health of young people. In such cases, appropriate access to health records is important. A lack of information can interrupt or delay services, lead to inappropriate case planning, and, in some cases, cause real harm. At the same time, disclosures that do not center young people can put them at risk.

A complicated array of federal and state confidentiality laws shape when and with whom information is shared by agencies, schools, and mental health and health care providers. NCYL helps agencies and professionals who work with youth address the complicated questions surrounding information sharing. NCYL is providing legal education, policy advocacy, and technical assistance to county and state agencies to help them develop information sharing systems that center youth voice, and balance privacy needs with the need for information.

Understanding and improving the law 

Federal, state and local laws and regulations that impact medical consent and confidentiality for children and youth directly impact their health access and health equity. They also can be confusing and ever-changing. NCYL developed and maintains a centralized overview of the latest developments in law and policy so youth, families and service providers can understand and maintain lawful consent and confidentiality rights and information sharing practices. NCYL also advocates to protect and expand rights that will increase health access and equity.