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  1. Confidentiality in Adolescent Health Care:Research, Ethics, Law, and Policy Abigail English, JD Director Center for Adolescent Health & the Law Treuman Katz Center for Pediatric Bioethics Seattle Children’s Hospital Seattle – July 25, 2009

  2. Angela Roddey Holder In honor of a brilliant scholar, a tireless advocate to ensure justice for the vulnerable, especially women and adolescents, and a true friend, who was greatly admired and will be long remembered for her many contributions to law and bioethics. Center for Adolescent Health & the Law

  3. Overview • Rationale & research findings • Ethical principles • Legal framework • Federal law • State law • Professional policies • Continuing controversies Center for Adolescent Health & the Law

  4. First Principles • Comprehensive services • Minors & adults • Positive family involvement • Lack of supportive families • Laws & adolescent access to care Center for Adolescent Health & the Law

  5. Parents and Adolescents • Voluntary communication • Supportive parents • Adolescent disclosure • Mandated communication • Dysfunctional families • Adolescent autonomy • Interests of adolescents & parents Center for Adolescent Health & the Law

  6. Rationale for Confidentiality Protection • Avoid negative health outcomes • Protect health of adolescents • Protect public health • Encourage adolescents to seek needed care • Supported by research findings Center for Adolescent Health & the Law

  7. Research Findings: Privacy Concerns • Many adolescents have privacy concerns • Adolescents are primarily concerned about disclosure of information to their parents related to sexual behaviors, substance use, and mental health Center for Adolescent Health & the Law

  8. Adolescents Have Privacy Concerns • 58% of 9th -12th grade students agree with the following statement: “There are some health concerns that I would not want my parents to know about.” (N=1295) • [Cheng et al. JAMA. 1993] Center for Adolescent Health & the Law

  9. Research Findings: Effect on Behavior • Privacy concerns can influence: • Whether adolescents seek care • When adolescents seek care • Where adolescents seek care • How openly adolescents talk with physicians Center for Adolescent Health & the Law

  10. Privacy Concerns: Foregone Care • Concerns about parental notification • Consider not seeking care • Needing health care but not getting it • Add Health study: adolescents who forego care at higher risk of health problems Center for Adolescent Health & the Law

  11. Privacy Concerns: Choice of Provider • Choice of family planning clinic • “Don’t have to involve family” • “Usual MD might send records home” Center for Adolescent Health & the Law

  12. Privacy Concerns: Communication • Greater assurance of confidentiality • Increased willingness to disclose sensitive information Center for Adolescent Health & the Law

  13. Research Findings: Outcomes & Cost • Likely influence of privacy concerns • Reproductive health outcomes • Rates of sexually transmitted infections • Health outcomes are costly Center for Adolescent Health & the Law

  14. Privacy Concerns: Parental Knowledge • Likely parental knowledge or mandated notification • Decreased willingness to be tested for STD • Increased likelihood of stopping use of all sexual health services • Increased likelihood of stopping use of clinic • Minimal likelihood of stopping sexual activity Center for Adolescent Health & the Law

  15. Privacy Concerns: Cost • Texas study of projected costs due to loss of confidentiality in publicly funded clinics • Increased pregnancies, births, abortions, and untreated STDs • Projected annual increased costs > $43 million Center for Adolescent Health & the Law

  16. Ethical Principles • Respect for autonomy • Honoring adolescent’s privacy choices • Nonmaleficence • Avoiding harm from disclosure • Beneficence • Promoting candor & good clinical care • Justice • Supporting access to care Center for Adolescent Health & the Law

  17. Professional Organization Policies: Themes • Codes of ethics • Policy & position papers • Rationale for supporting confidentiality • Informing adolescents and parents about confidentiality protections and limits to those rights Center for Adolescent Health & the Law

  18. Professional Organization Policies: Services, Populations, & Settings • Policies supporting confidential access to specific health services, such as: • Preventive health care • Testing & treatment for STDs & HIV • Contraception, pregnancy-related services, abortion, & other reproductive health services • Concerns for specific populations of adolescents • Confidentiality in particular health care settings Center for Adolescent Health & the Law

  19. The Legal Framework • Complex patchwork • State & federal law • Constitution, statutes, court decisions • Reproductive rights • Family roles • Status of minor children • Rights & responsibilities of parents Center for Adolescent Health & the Law

  20. Relationship of Consent & Confidentiality • “Consent & confidentiality” • Confidentiality & disclosure in consent laws • Linkage • Clinical practice • Ethical guidelines • Professional policies • State & federal laws Center for Adolescent Health & the Law

  21. History of Minor Consent Laws • Earliest laws enacted in 1950s • Expansion in 1960s & 1970s • Stability in 1980s • Attempts to limit in 1990s & beyond Center for Adolescent Health & the Law

  22. Minor Consent Laws in 50 States & DC • Minor consent laws in all states • Minor’s status • Services minor is seeking • Treatment without consent Center for Adolescent Health & the Law

  23. Consent Laws Based on Status • Emancipated minor • Married minor • Minor in the armed services • Mature minor • Minor living apart from parents • High school graduate • Minor over a certain age • Pregnant minor • Incarcerated minor Center for Adolescent Health & the Law

  24. Consent Laws Based on Services (1) • “Pregnancy related care” • Minors usually may consent • Contraceptive services • Prenatal & maternity care • Minors often may not consent • Sterilization • Abortion Center for Adolescent Health & the Law

  25. Consent Laws Based on Services (2) • STD/VD prevention, diagnosis, & treatment • Reportable disease prevention, diagnosis, & treatment • HIV/AIDS testing & treatment • Drug or alcohol counseling & treatment • Outpatient mental health services • Diagnosis & treatment for sexual assault Center for Adolescent Health & the Law

  26. State Confidentiality Laws • State constitutional right of privacy • Minor consent • Medical confidentiality & medical records • Patient access to health records • Professional licensing • Evidentiary privileges • State funding programs Center for Adolescent Health & the Law

  27. Federal Confidentiality Laws • Federal constitutional right of privacy • Federal funding programs • Title X • Medicaid • Regulations for federal drug & alcohol programs • HIPAA Privacy Rule • Importance of state laws in application of federal laws Center for Adolescent Health & the Law

  28. HIPAA Privacy Rule: Minors as Individuals (1) • Minors are treated as “individuals” under HIPAA Privacy Rule in 3 circumstances: • Minor has the right to consent and has consented; or • Minor may obtain care without parental consent and the minor, a court, or someone else has consented; or • Parents accede to confidentiality agreement between minor and health care provider Center for Adolescent Health & the Law

  29. HIPAA Privacy Rule: Minors as Individuals (2) • Minor acting as “the individual” can exercise rights re “protected health information” • Right of the individual • Access to information • Control over disclosure • Request privacy protection Center for Adolescent Health & the Law

  30. HIPAA Privacy Rule: Disclosure to Parents • If state or other law requires it, provider must disclose • If state or other law prohibits it, provider may not disclose • If state or other law permits it, provider has discretion to disclose • If state or other law is silent or unclear, provider has discretion to grant or withhold access Center for Adolescent Health & the Law

  31. Confidentiality Protections: State Minor Consent Laws • Explicit protection of confidentiality in minor consent laws • Reference to minor consent laws in other statutes • Grant of discretion to physician or health care professional to disclose information Center for Adolescent Health & the Law

  32. Laws Mandating Disclosure • Parental notification/consent provisions • Child abuse reporting statutes • Disclosure requirements when minor is dangerous to self or others Center for Adolescent Health & the Law

  33. Recent Efforts to Repeal or Restrict Consent & Confidentiality for Minors • Parents’ rights laws • Proposed constitutional amendments • Proposed federal & state statutes • Outright repeal of all minor consent provisions • Partial repeal of some minor consent provisions • Limitations of confidentiality • Parental notification provisions • Parental access to records • Direct requirements in federal or state statutes • Appropriations riders Center for Adolescent Health & the Law

  34. Future Policy Implications • All adolescents should have access to comprehensive health care • Confidentiality, and the ability to give independent consent, can be important elements of that access • Protecting consent & confidentiality for adolescents is not inconsistent with helping them communicate with parents & other adults • Current laws provide strong protections but are at risk Center for Adolescent Health & the Law

  35. “Confidential Care” vs. “No Care” “When a teenager needs help, confidential health care is better than no health care at all.”

  36. Conclusion • Research findings and current professional & legal guidelines support parental involvement, but also support the availability of confidential adolescent health care for some adolescents & for specific sensitive health problems Center for Adolescent Health & the Law