High School STD Screening: Parental Consent and Confidentiality

1. High School STD Screening: Parental Consent and Confidentiality Meighan E. Rogers, MPH 2008 National STD Prevention Conference Chicago, IL March 11, 2008

2. Overview • New York City (NYC) high school STD screening program • Scope • Results • Types of parental consent: Active vs. Passive • Parental consent processes utilized across US • Confidential screening and result distribution • Addressing parental concerns The findings and conclusions in this presentation are those of the author(s) and do not necessarily represent the views of the CDC/ATSDR.

3. NYC School Screening Program • NYC: 300,000 high school aged students • Program scope: Target public schools, neighborhoods with high STD rates, ~45% of program schools have school-based health centers (SBHCs) • School wide education, voluntary confidential urine CT/GC testing • Began Spring 2006 - 5 pilot schools • 2007 (Current) school year: • Goal: Educate 30,000 youth, test 15,000 • 7 full time program staff

4. NYC School Screening Program Results • 2006 school year: • Educated 9500 students (44 schools) • Tested 4,375 (47%) • 209 positive (4.8%); 99% treated • 2007 (current) school year YTD: • Educated 10,561 (~50 schools) • Tested 5178 (49%) • 400 positive (7.7%); 92% treated to date, ongoing

5. NYC CT/GC Positivity, 2007-2008 * Difference between males & females significant at p<.0001

6. Approaches to Parental Involvement • Active consent • Passive consent • Notification – parents are notified that the program will take place, are not given option to opt-out

7. Active Consent – “Opt-in” • Requires all parents to return consent indicating whether they want their child to participate • If consent form not returned, assume refusal Disadvantages: • Lowers response rates/limits participation (40-70%), can limit accuracy, completeness of data and reach • Non-response may indicate disinterest rather than opposition • Costly, time consuming to ensure response

8. Active Consent (Cont) Disadvantages: • Selection bias- certain groups more or less likely to respond • Under-represents minorities; students of parents with alcohol or substance abuse problems • Over-represents students with higher SES, 2 parent families

9. Passive Consent - “Opt-out” • Requires parents to respond only if they do not want their child to participate • Non-response is an affirmative response • Secures higher response rates (avg 80-96%) • Ethical method of holding up informed consent principles while securing higher participation Disadvantages: • Non-response may indicate agreement or apathy • Low health literacy, language barriers obstacles to assuring parental understanding

10. State Laws – STI Services • All 50 states, and Wash DC, allow minors (under age 18*) to consent to STI diagnosis and treatment services without parental consent/involvement • Louisiana and Maryland physicians are allowed to inform the minor’s parents about STI services if in minor’s best interests • SBHCs require parental consent for students to access services, however some will still screen for sexual/repro health services under state law * While no minimum age is specified, a child younger than 12 years would not beconsidered to have the capacity for informed consent

11. Consent Processes Utilized for School STD Screening Across US • Baltimore: Program conducted through SBHCs • SBHCs agreed to screen/treat for STIs without parental consent, under Maryland state law • New Orleans: Active consent process • School officials and IRB require active parental consent, despite state law • STD program distributes written consent through students • If not returned, parents called by STD staff to elicit consent • Parental consent rates between 50-75%

12. Consent Processes Utilized for School STD Screening Across US • Philadelphia: City-wide parental notification • Approved as non-research, not reviewed by IRB • Letters, signed by Health Commissioner and CEO of Schools, sent out to parents by schools • NYC: Passive consent process • Despite NYS law, Dept of Ed IRB mandated passive consent • Schools conduct consenting process. If opted out, school responsible for prohibiting student’s participation • Secures high participation rates (Range ~95-100%)

13. NYC Passive Consent Letter

14. Consent Processes Utilized for School STD Screening across US • Indian Health Service: Consent process dictated by tribe • Minors > 12 able to consent by law, however tribe dictates type of consent required • Most recent tribe required active consent • Consent forms sent home by school • Low participation rates, returned forms mostly declines

15. Screening – Ensuring Confidentiality • Baltimore/New Orleans: • Testing conducted individually in SBHCs, confidentiality less of an issue, not mass screening • Philadelphia/NYC: • All students participate in education piece, complete demographic info • All students taken to bathrooms for voluntary, confidential testing, all submit test kits (in bag) whether specimen or not • IHS: • Site specific: some sites conduct testing individually Interested in using mass screening Philadelphia/NYC model

16. NYC Screening Materials

17. Confidentiality of Test Results • Test results only given to individual student • Philadelphia / NYC: Students create a secret password; test results given by phone • New Orleans: • Until 2000, results given personally in sealed envelopes using code numbers • Since 2000, students access results through automated phone system using a PIN and additional access code • Baltimore: Results given to each student individually in SBHC, by Nurse/NP • IHS: Results (positive or negative) given to each student individually by nurse

18. Parental Involvement • Attend parent association meetings pre-screening to present program, answer questions • Parental Feedback: • Often support STD education, testing • Concerned about confidentiality of testing and treatment • Interested in obtaining test results • Concerned about treatment without their knowledge

19. Managing Parental Concerns • Describe law preventing dept health staff from sharing test results • Explain that while dept health staff cannot share results, adolescents can share their own results • Encourage parents to have conversations with their children prior to/after program • All students assessed for allergy prior to treatment by NP or MD

20. Thank you • NYC DOHMH STD Control: Sophie Nurani, Susan Blank, Steve Rubin, Julia Schillinger, Kristen Harvey • STD Screening Program Staff – Public Health Advisors • NYC DOHMH Bureau of School Health • NYC Dept of Education • Fund for Public Health in NY/NY Community Trust Contact Info: mrogers@health.nyc.gov, 212-788-4428