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 New York City (NYC) high school STD screening program Scope Scope Results Results Types of parental consent: Active vs. Passive Types of parental consent: Active vs. Passive Parental consent processes utilized across US Parental consent processes utilized across US Confidential screening and result distribution Confidential screening and result distribution Addressing parental concerns 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 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) 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 School wide education, voluntary confidential urine CT/GC testing Began Spring 2006 - 5 pilot schools Began Spring 2006 - 5 pilot schools 2007 (Current) school year: 2007 (Current) school year: Goal: Educate 30,000 youth, test 15,000 Goal: Educate 30,000 youth, test 15,000 7 full time program staff 7 full time program staff

4. NYC School Screening Program Results 2006 school year: 2006 school year: Educated 9500 students (44 schools) Educated 9500 students (44 schools) Tested 4,375 (47%) Tested 4,375 (47%) 209 positive (4.8%); 99% treated 209 positive (4.8%); 99% treated 2007 (current) school year YTD: 2007 (current) school year YTD: Educated 10,561 (~50 schools) Educated 10,561 (~50 schools) Tested 5178 (49%) Tested 5178 (49%) 400 positive (7.7%); 92% treated to date, ongoing 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 Active consent Passive consent Passive consent Notification – parents are notified that the program will take place, are not given option to opt-out 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 Requires all parents to return consent indicating whether they want their child to participate If consent form not returned, assume refusal If consent form not returned, assume refusalDisadvantages: Lowers response rates/limits participation (40-70%), can limit accuracy, completeness of data and reach Lowers response rates/limits participation (40-70%), can limit accuracy, completeness of data and reach Non-response may indicate disinterest rather than opposition Non-response may indicate disinterest rather than opposition Costly, time consuming to ensure response Costly, time consuming to ensure response

8. Active Consent (Cont) Disadvantages: Selection bias- certain groups more or less likely to respond Selection bias- certain groups more or less likely to respond Under-represents minorities; students of parents with alcohol or substance abuse problems Under-represents minorities; students of parents with alcohol or substance abuse problems Over-represents students with higher SES, 2 parent families 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 Requires parents to respond only if they do not want their child to participate Non-response is an affirmative response Non-response is an affirmative response Secures higher response rates (avg 80-96%) Secures higher response rates (avg 80-96%) Ethical method of holding up informed consent principles while securing higher participation Ethical method of holding up informed consent principles while securing higher participationDisadvantages: Non-response may indicate agreement or apathy Non-response may indicate agreement or apathy Low health literacy, language barriers obstacles to assuring parental understanding Low health literacy, language barriers obstacles to assuring parental understanding

10. State Laws – STI Services All 50 states, and Wash DC, allow All 50 states, and Wash DC, allow minors (under age 18*) to consent to STI diagnosis and treatment services without parental consent/involvement p 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 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 be considered to have the capacity for informed consent

11. NY State Law In NY state, minors have the right to consent to the following health services without parental consent: In NY state, minors have the right to consent to the following health services without parental consent: Testing and treatment for STIs Testing and treatment for STIs Testing for HIV Testing for HIV Pregnancy testing Pregnancy testing Prenatal care Prenatal care Contraception, including emergency contraception Contraception, including emergency contraception Abortion Abortion

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

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

14. NYC Passive Consent Letter

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

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

17. NYC Screening Materials

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

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

20. Managing Parental Concerns Describe law preventing dept health staff from sharing test results 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 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 Encourage parents to have conversations with their children prior to/after program All students assessed for allergy prior to treatment by NP or MD All students assessed for allergy prior to treatment by NP or MD

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