Abstract
The purpose of this chapter is to describe the concerns of an ethical nature for clinicians and researchers working in the area of pediatric HIV. Drawing on relational ethics within a goodness-of-fit model, we explore concepts related to clinical decision-making, informed consent, and confidentiality as well as ethical issues related to health inequities and work with sexual and gender minority youth. Practical recommendations for treatment and clinical research are included.
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Notes
- 1.
From a legal perspective, it is important to note that in the cases of divorce, a non-custodial parent retains parental rights unless parental rights have been explicitly terminated.
Annotated Bibliography
Chenneville, T., Machacek, M., Tan, R., Lujan-Zilberman, J., Emmanuel, P., & Rodriguez, C. (2014). Decisional capacity among youth with HIV: Results from the MacArthur competence tool for treatment. AIDS Patient Care and STDs, 28(8), 1–8. doi:10.1089/apc.2013.0374
This study assessed the decisional capacity of youth living with HIV, ages 13–24, using the MacArthur Competence Tool for Treatment. Youth demonstrated appreciation for the potential of HIV treatment to help them, but many did not demonstrate understanding of their disorder and consequential reasoning. Youth strengths and weaknesses are discussed.
Fisher, C. B., Arbeit, M. Dumont, M., Macapagal, & Mustanski, B. (2016). Self-consent for HIV prevention research involving sexual and gender minority youth: Reducing barriers through evidence-based ethics. Journal of Research on Human Research Ethics. doi:10.1177/1556264616633963
This study examined self-consent capacity among sexual and gender minority youth ages 14–17 for a hypothetical HIV prevention pre-exposure prophylaxis (PrEP) adherence trial. Youth highlighted guardian permission as a significant barrier to participation, and demonstrated the ability to provide informed, rational, and voluntary self-consent to age- and population- appropriate procedures.
Masty, J., & Fisher, C. B. (2008). A goodness of fit approach to parent permission and child assent pediatric intervention research. Ethics & Behavior, 13, 139–160. doi:10.1080/10508420802063897
This article presents a goodness-of-fit model that frames the child’s disorder-based vulnerabilities in the context of the child’s cognitive and emotional maturity, the intervention approach, and the family system. Child capacity, parent understanding, history of family decision-making, and child’s autonomy strivings are among factors to consider in designing consent procedures.
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Fisher, C.B., Arbeit, M.R., Chenneville, T. (2016). Goodness-of-Fit Ethics for Practice and Research Involving Children and Adolescents with HIV. In: Chenneville, T. (eds) A Clinical Guide to Pediatric HIV. Springer, Cham. https://doi.org/10.1007/978-3-319-49704-4_9
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DOI: https://doi.org/10.1007/978-3-319-49704-4_9
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