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Confidentiality in Adolescent Health Care: Research, Ethics, Law, and Policy
Abigail English, JDDirector
Center for Adolescent Health & the Law
Treuman Katz Center for Pediatric BioethicsSeattle Children’s Hospital
Seattle – July 25, 2009
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.
Center for Adolescent Health & the Law
Overview
Rationale & research findings Ethical principles Legal framework
Federal law State law
Professional policies Continuing controversies
Center for Adolescent Health & the Law
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
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
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
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
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
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
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
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
Greater assurance of confidentiality Increased willingness to disclose
sensitive information
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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 individualAccess to informationControl over disclosureRequest privacy protection
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
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
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
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
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
“Confidential Care” vs. “No Care”
“When a teenager needs help, confidential health care is better than no health care at all.”