chapter  4
19 Pages

Restoring Trust? Trust and Informed Consent in the Aftermath of the Organ Retention Scandal

ByVALERIE M. SHEACH LEITH

The organ retention scandal in the United Kingdom arose in the autumn of 1999, when it became public knowledge that organs and tissues, predominately from the bodies of infants and young children, had been routinely retained after post-mortem for subsequent diagnostic, teaching, audit and research purposes. This practice caused great distress to many parents who had not been aware of what a post-mortem entailed. In the aftermath of revelations about organ retention, parents expressed two areas of concern. First, they believed that they had not given their ‘informed consent,’ as it is now understood, for organs and tissue to be retained. Second, a signifi - cant number were also concerned about the body wholeness of their child (Campbell and Willis 2005; Richardson 2004; Sheach Leith 2004; Sheach Leith 2007). They felt they had buried or cremated not a ‘whole’ body but an ‘empty shell.’