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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. Angela Roddey Holder.

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confidentiality in adolescent health care research ethics law and policy

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

angela roddey holder
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

overview
Overview
  • Rationale & research findings
  • Ethical principles
  • Legal framework
    • Federal law
    • State law
  • Professional policies
  • Continuing controversies

Center for Adolescent Health & the Law

first principles
First Principles
  • Comprehensive services
  • Minors & adults
  • Positive family involvement
  • Lack of supportive families
  • Laws & adolescent access to care

Center for Adolescent Health & the Law

parents and adolescents
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

rationale for confidentiality protection
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

research findings privacy concerns
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

adolescents have privacy concerns
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

research findings effect on behavior
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

privacy concerns foregone care
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

privacy concerns choice of provider
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

privacy concerns communication
Privacy Concerns: Communication
  • Greater assurance of confidentiality
  • Increased willingness to disclose sensitive information

Center for Adolescent Health & the Law

research findings outcomes cost
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

privacy concerns parental knowledge
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

privacy concerns cost
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

ethical principles
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

professional organization policies themes
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

professional organization policies services populations settings
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

the legal framework
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

relationship of consent confidentiality
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

history of minor consent laws
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

minor consent laws in 50 states dc
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

consent laws based on status
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

consent laws based on services 1
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

consent laws based on services 2
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

state confidentiality laws
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

federal confidentiality laws
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

hipaa privacy rule minors as individuals 1
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

hipaa privacy rule minors as individuals 2
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

hipaa privacy rule disclosure to parents
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

confidentiality protections state minor consent laws
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

laws mandating disclosure
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

recent efforts to repeal or restrict consent confidentiality for minors
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

future policy implications
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

confidential care vs no care

“Confidential Care” vs. “No Care”

“When a teenager needs help,

confidential health care

is better than no health care at all.”

conclusion
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