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. Center for Adolescent Health & the Law 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.

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

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

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

6. Center for Adolescent Health & the Law 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

7. Center for Adolescent Health & the Law 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

8. Center for Adolescent Health & the Law 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]

9. Center for Adolescent Health & the Law 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

10. Center for Adolescent Health & the Law 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

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

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

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

14. Center for Adolescent Health & the Law 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

15. Center for Adolescent Health & the Law 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

16. Center for Adolescent Health & the Law 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

17. Center for Adolescent Health & the Law 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

18. Center for Adolescent Health & the Law 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

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

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

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

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

23. Center for Adolescent Health & the Law 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

24. Center for Adolescent Health & the Law 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

25. Center for Adolescent Health & the Law 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

26. Center for Adolescent Health & the Law 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

27. Center for Adolescent Health & the Law 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

28. Center for Adolescent Health & the Law 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

29. Center for Adolescent Health & the Law 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

30. Center for Adolescent Health & the Law 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

31. Center for Adolescent Health & the Law 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

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

33. Center for Adolescent Health & the Law 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

34. Center for Adolescent Health & the Law 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

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

36. Center for Adolescent Health & the Law 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