Ethical considerations for involving adolescents in biomedical HIV prevention research

Author:

Nakalega Rita,Akello Carolyne,Gati Brenda,Nakabiito Clemensia,Nolan Monica,Kamira Betty,Etima Juliane,Nakyanzi Teopista,Kemigisha Doreen,Nanziri Sophie C.,Nanyonga Stella,Nambusi Maria Janine,Mulumba Emmie,Biira Florence,Nabunya Hadijah Kalule,Akasiima Simon Afrika,Nansimbe Joselyne,Maena Joel,Babirye Juliet Allen,Ngure Kenneth,Mujugira Andrew

Abstract

Abstract Background Involvement of adolescent girls in biomedical HIV research is essential to better understand efficacy and safety of new prevention interventions in this key population at high risk of HIV infection. However, there are many ethical issues to consider prior to engaging them in pivotal biomedical research. In Uganda, 16–17-year-old adolescents can access sexual and reproductive health services including for HIV or other sexually transmitted infections, contraception, and antenatal care without parental consent. In contrast, participation in HIV prevention research involving investigational new drugs requires adolescents to have parental or guardian consent. Thus, privacy and confidentiality concerns may deter adolescent participation. We describe community perspectives on ethical considerations for involving adolescent girls in the MTN 034 study in Uganda. Methods From August 2017 to March 2018, we held five stakeholder engagement meetings in preparation for the MTN 034 study in Kampala, Uganda (NCT03593655): two with 140 community representatives, two with 125 adolescents, and one with 50 adolescents and parents. Discussions were moderated by the study team. Proceedings were documented by notetakers. Summary notes described community perspectives of adolescent participation in HIV research including convergent, divergent or minority views, challenges, and proposed solutions. Results Most community members perceived parental or guardian consent as a principal barrier to study participation due to concerns about adolescent disclosure of pre-marital sex, which is a cultural taboo. Of 125 adolescent participants, 119 (95%) feared inadvertent disclosure of sexual activity to their parents. Community stakeholders identified the following critical considerations for ethical involvement of adolescents in HIV biomedical research: (1) involving key stakeholders in recruitment, (2) ensuring confidentiality of sensitive information about adolescent sexual activity, (3) informing adolescents about information to be disclosed to parents or guardians, (4) offering youth friendly services by appropriately trained staff, and (5) partnering with community youth organizations to maximize recruitment and retention. Conclusions Stakeholder engagement with diverse community representatives prior to conducting adolescent HIV prevention research is critical to collectively shaping the research agenda, successfully recruiting and retaining adolescents in HIV clinical trials and identifying practical strategies to ensure high ethical standards during trial implementation.

Funder

Fogarty International Center

Publisher

Springer Science and Business Media LLC

Subject

Health Policy,Health(social science),Issues, ethics and legal aspects

Reference27 articles.

1. UNAIDS. Global AIDS update. Seizing the moment: tackling entrenched inequalities to end epidemics. 2020.

2. UNICEF. Synthesis report of the rapid assessment of adolescent and HIV programme context in five countries: Botswana, Cameroon, Jamaica, Swaziland and Zimbabwe. In: All in to end adolescent AIDS. 2015. http://www.childrenandaids.org/node/752. Accessed 21 July 20.

3. Schaefer R, Gregson S, Eaton JW, Mugurungi O, Rhead R, Takaruza A, et al. Age-disparate relationships and HIV incidence in adolescent girls and young women: evidence from Zimbabwe. Aids. 2017;31(10):1461–70. https://doi.org/10.1097/qad.0000000000001506.

4. Jewkes RK, Dunkle K, Nduna M, Shai N. Intimate partner violence, relationship power inequity, and incidence of HIV infection in young women in South Africa: a cohort study. Lancet. 2010;376(9734):41–8. doi:https://doi.org/10.1016/s0140-6736(10)60548-x.

5. WHO. Consolidated guideline on sexual and reproductive health and rights of women living with HIV: executive summary. World Health Organization. 2017. https://www.who.int/reproductivehealth/publications/gender_rights/Ex-Summ-srhr-women-hiv/en/. Accessed 21 July 20.

同舟云学术

1.学者识别学者识别

2.学术分析学术分析

3.人才评估人才评估

"同舟云学术"是以全球学者为主线,采集、加工和组织学术论文而形成的新型学术文献查询和分析系统,可以对全球学者进行文献检索和人才价值评估。用户可以通过关注某些学科领域的顶尖人物而持续追踪该领域的学科进展和研究前沿。经过近期的数据扩容,当前同舟云学术共收录了国内外主流学术期刊6万余种,收集的期刊论文及会议论文总量共计约1.5亿篇,并以每天添加12000余篇中外论文的速度递增。我们也可以为用户提供个性化、定制化的学者数据。欢迎来电咨询!咨询电话:010-8811{复制后删除}0370

www.globalauthorid.com

TOP

Copyright © 2019-2024 北京同舟云网络信息技术有限公司
京公网安备11010802033243号  京ICP备18003416号-3