Department of Paediatrics and School of Public Health, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg; Wits Reproductive Health and HIV Institute, Johannesburg, South Africa.
S Afr Med J. 2017 Jul 28;107(8):679-683. doi: 10.7196/SAMJ.2017.v107i8.12409.
Adolescents living with HIV are an emerging group in the global HIV/AIDS epidemic. Mental health in this population affects HIV care, treatment, consequential morbidity and secondary transmission. There is a paucity of research regarding these youth in South Africa (SA), partly because section 71 of the National Health Act of 2003 (NHA) requires parental or guardian's consent.
To explore legal and ethical issues related to conducting adolescent mental health research in SA.
After obtaining a High Court order permitting research on minors aged <18 years without prior parental or guardian's consent, we used qualitative and quantitative methods to interview adolescents in five clinics serving HIV-positive adolescents in Johannesburg.
Our study enrolled 343 participants; 74% were orphaned and did not have legal guardians, 27% were symptomatic for depression, anxiety or post-traumatic stress disorder, 24% were suicidal, and almost 90% did not feel that they belonged in the family with which they lived. Without court intervention, most of the participants could not have participated in this research because parental consent was impossible to obtain. This case study argues for exceptions to the parental consent requirement, which excludes orphaned and vulnerable children and youth from research.
Recommendations are made to promote ethical integrity in conducting mental health research with adolescents. A balance is needed between protecting adolescents from exploitation and permitting access to benefits of research. Requiring parental consent for all research does not necessarily give effect to policy. For the vast majority of SA HIV-positive adolescents, parental consent is not possible. Section 71 of the NHA ought to be amended to facilitate valuable and necessary research concerning HIV-positive orphan children and adolescents.
青少年艾滋病感染者是全球艾滋病疫情中新兴的群体。这一人群的心理健康状况会影响艾滋病的护理、治疗、继发疾病和二次传播。南非（SA）针对该人群的研究非常有限，部分原因是 2003 年《国家健康法》（NHA）第 71 条要求获得父母或监护人的同意。
探索在南非开展青少年心理健康研究相关的法律和伦理问题。
在获得高等法院允许在没有事先获得父母或监护人同意的情况下对 18 岁以下未成年人进行研究的命令后，我们使用定性和定量方法在约翰内斯堡的五家为艾滋病病毒阳性青少年服务的诊所中对青少年进行了访谈。
我们的研究共纳入 343 名参与者；74%是孤儿，没有法定监护人，27%出现抑郁、焦虑或创伤后应激障碍症状，24%有自杀念头，近 90%的人觉得自己不属于所居住的家庭。如果没有法院干预，大多数参与者都无法参与这项研究，因为无法获得父母的同意。本案例研究呼吁对父母同意要求进行例外处理，将孤儿和弱势儿童和青年排除在研究之外。
为促进对青少年进行心理健康研究的道德完整性提出了建议。需要在保护青少年免受剥削和允许他们从研究中受益之间取得平衡。要求所有研究都获得父母同意不一定能实现政策目标。对于绝大多数南非艾滋病病毒阳性青少年来说，获得父母同意是不可能的。《NHA》第 71 条应加以修正，以促进针对艾滋病病毒阳性孤儿儿童和青少年的有价值和必要的研究。
