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

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)....

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Bibliographic Details
Main Authors: Ann Elaine Strode (Author), Catherine Slack (Author)
Format: Book
Published: AOSIS, 2013-09-01T00:00:00Z.
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Summary: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.
Item Description:1608-9693
2078-6751
10.4102/sajhivmed.v14i3.62