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Child privacy rights: A ‘Cinderella’ issue in HIV-prevention research

Ann Elaine Strode, Catherine Slack
Southern African Journal of HIV Medicine | Vol 14, No 3 | a62 | DOI: https://doi.org/10.4102/sajhivmed.v14i3.62 | © 2013 Ann Elaine Strode, Catherine Slack | This work is licensed under CC Attribution 4.0
Submitted: 12 December 2013 | Published: 17 September 2013

About the author(s)

Ann Elaine Strode, School of Law, University of KwaZulu-Natal, Pietermaritzburg, South Africa; HIV/AIDS Vaccines Ethics Group, School of Applied Human Sciences, University of KwaZulu-Natal, Pietermaritzburg, South Africa, South Africa
Catherine Slack, HIV/AIDS Vaccines Ethics Group, School of Applied Human Sciences, University of KwaZulu-Natal, Pietermaritzburg, South Africa, South Africa


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Abstract

Legal debates regarding child participation in HIV research have tended to focus on issues of informed consent. However, much less attention has been given to privacy; accordingly, we classify this as a ‘Cinderella issue’ that has been excluded from ‘the ball’ (academic debate). Here we argue that privacy issues are as important as consent issues in HIV-prevention research. We describe a child’s right to privacy regarding certain health interventions in South African law, and identify four key norms that flow from the law and that could be applied to HIV-prevention research: (i) children cannot have an expectation of privacy regarding research participation if they have not given independent consent to the study; (ii) children may have an expectation of privacy regarding certain components of the study, such as HIV testing, if they consent independently to such services; (iii) children’s rights to privacy in health research are limited by mandatory reporting obligations; (iv) children’s rights to privacy in HIV-prevention research may be justifiably limited by the concept of the best interests of the child. We conclude with guidelines for researchers on how to implement these principles in HIV-related research studies.


Keywords

Ethics; law; children; privacy; HIV-prevention research

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