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Ethical Considerations for Engaging Children and Adolescents Living with HIV in Research in African Countries: A

Emma Gillette1, Winstone Nyandiko2,3, Ashley Chory1

  • 1Department of Global Health and Health Systems Design, Icahn School of Medicine at Mount Sinai, New York, NY, USA.

Journal of Empirical Research on Human Research Ethics : JERHRE
|October 24, 2023
PubMed

Insights

Engaging children and adolescents living with HIV (CALWH) in research requires careful ethical consideration. This systematic review identified seven key ethical domains to guide responsible research practices with CALWH.

Area of Science:

  • Public Health
  • Bioethics
  • Pediatric HIV Research

Background:

  • Engaging children and adolescents living with HIV (CALWH) in research is crucial for developing youth-friendly health services and improving HIV care.
  • Ethical considerations are paramount when involving CALWH in research to protect their rights and well-being.
  • Existing research on ethical engagement of CALWH needs systematic review to identify best practices.

Approach:

  • A systematic review was conducted to identify key ethical considerations for engaging CALWH in research.
  • The review focused on primary research articles from African countries examining ethical issues related to CALWH participation in studies.
  • Ten studies met the inclusion criteria, forming the basis for the ethical domain extraction.

Key Points:

  • Seven key ethical domains were identified: justifications for engagement, community involvement, informed consent/assent, caregiver involvement, perceived benefits, perceived risks, and confidentiality.
  • Justifications for involving CALWH must be clearly established.
  • Informed consent/assent processes need to be age-appropriate and understandable.
  • Community and caregiver involvement are essential for ethical research conduct.
  • Understanding CALWH's perceptions of benefits and risks is vital.
  • Maintaining confidentiality is a critical ethical imperative.

Conclusions:

  • The identified ethical domains provide a framework for the responsible engagement of CALWH in research.
  • Implementing these ethical considerations can enhance the quality and integrity of research involving young people living with HIV.
  • This framework supports the development of ethical guidelines for pediatric HIV research globally.

Keywords:
AfricaHIVadolescentschildrenresearch ethics

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