Ethical and protection issues in research and programming – Serbia example

1. Ethical and protection issues in research and programming – Serbia example Jelena ZajeganovićJakovljević UNICEF Serbia

2. HIV in Serbia • Low HIV prevalence country – 2,317 registered, 1,304 living – 0.04% (15-49) • Affecting younger populations – 47% < 30years • From IDU to sexual transmission (largely MSM) – 80% of newly diagnosed/57% homo/bisexual • Second generation surveillance identified every 4th among IDUs and almost every second among SW and MSM being 15-24 years of age

3. A profile of young IDU in Serbia • Male • 25-50% chances to be a Roma • Elementary school or less • Unemployed • 30% chances of not having own health insurance • 50% chances to have Hep C • Every 8th (12%) spent some time in correctional institution, 5% parental care • But 60% have been prosecuted for committing an offence, and 46% for crime • Initiated around 18 • 50% chances that I inject every day • 35% shared in the last month, 86% knows it is risky • 42% anal sex with opposite sex • 40% used condom at last sex • 50% in steady relationship, 67% that it is not IDU person • Tried to stop by themselves , every third used treatment • 6% received preventive services in the last year • 55% know for testing, 34% tested at some point

4. Research issues The best interest of the childRespect for persons, Beneficence, Justice

5. Research issues – Age of consent In the case of HIV research the World Health Organisation (WHO) and UNAIDS state that: “The pre-eminent importance of understanding patterns of sexual and drug-using behaviour among adolescents justifies studies involving adolescents who are able to understand the risks and benefits of participating without parental consent. Children who lack the capacity to understand the risks and benefits of participation can only participate with parental consent. Such studies should only occur with the approval of ethics review committees and should demonstrate the availability, through referral, to psychological and social support services that participation may necessitate and to intervention services that will assist at-risk adolescents in modifying their behaviour.” WHO/UNAIDS Surveillance Working Group Ethical issues to be considered in second generation surveillance. Commissioned by the WHO/UNAIDS Surveillance Working Group to complement the discussions that take place with country staff in the course of training on second generation surveillance. WHO/UNAIDS, Geneva, April 28, 2004. Guidance point 4.

6. Research – Ethical review committees • Ethical and normative vacuum on research among children in the country • uncomfortable to be one to decide on excluding parental consent/assent despite share of international standards • biological testing concerns – medical intervention law, issues of support for minors who discover HIV positive status • behavioral – getting parental disapproval • Next steps/current work: • Collection of national and international knowledge and standards for argument proposals, expert team and national WG • Analyses of legislation, ethical codex, professional guidelines – identification of systemic opportunities • Developing ethical codex for research and programming , endorsement and training of ethical boards

7. RDS network in the city of Nis

8. Programme interventions • Increasing access of MARA to essential package of interventions for HIV: • Information and counseling • Condom availability • VCCT • Treatment of STIs • Harm reduction • Therapy for those living with HIV • + CHILD PROTECTION

9. Programming issues – challenges and ways forward • Parental and minor consent for medical intervention • Health care law - >15y can give consent themselves • VCCT guide – exception based on counselors assessment of the maturity and best interest of the child Action: Legislation interpretation and guidelines distribution, including evidence into documentation

10. Programming issues – challenges and ways forward • Harm reduction programmes for minors (needle exchange): • CRC • Legal issue on NEP prgms in general • Prejudices • Weak capacities of NEP and providers Action: support comprehensive package that includes motivation for treatment counseling, linkage with social services (supporting case management reform process – addressing registration, social protection…)

11. Programming issues – challenges and ways forward • HIV prevention with/without “rescue scheme” for minors who sell sex/sexually exploited but also drug users: • Protect adolescents but: • How to respect and deal with their refusal • How to deal with weak child protection services • Unfriendly service provision • Obscure if any drug treatment services • Protect HIV prevention service providers • Guidelines, protocols for action, interpretation of legislation

12. Programming approaches – risk and vulnerability in Serbia • NGO based interventions – IDUs, SW, street children • Public system strengthening – each system to early recognise and provide support (primary health, education and social protection – SWV, Institutions – JJ, Inst. for children) • Official and operationalised interaction and collaboration between sectors – provision of referral • Second-chance education for adolescent children of drug users and liaison with other services

13. Conclusion From complicated approaches to simple interventions From ideologies to practice No time to WAIT!

14. Thanks