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Cure research and consent: the Mississippi Baby, Barney Clark, Baby Fae and Martin Delaney

Abstract

Trials using children as subjects are much more problematic from an informed consent perspective than trials on competent adults, although the ‘therapeutic misconception’ is a central concern in both. The role of famous experiments and the use of one individual's experience to designate and justify a whole category of research have always threatened to undermine the validity of informed consent to research by making it seem to be a validated therapy. In research, the unintended consequence of ‘naming’ based on goals (‘cure’) or specific individuals (like the Mississippi Baby) tends to subvert informed consent when the famous case is a ‘success’, and to prematurely end a line of research if the named subject dies. Names, including the Mississippi Baby, Barney Clark, Baby Fae and even Martin Delaney, are more suggestive of fantasy than science. The word ‘cure’ should not be used in obtaining consent for HIV ‘cure trials’, and names of people involved in past experiments should be avoided in the informed consent process. These two modest proposals should reduce the risks of the therapeutic misconception in ‘cure research’.

  • Informed Consent
  • Research Ethics
  • Children
  • HIV Infection and AIDS
  • Research on Special Populations

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