Author Affiliations: Murdoch Childrens Research Institute (Drs Sexton and Metcalfe) and Genetic Health Services Victoria (Dr Sexton), Royal Children's Hospital, Parkville, Australia; and Department of Paediatrics, the University of Melbourne, Parkville (Drs Sexton and Metcalfe).
Research on stored tissue samples without the explicit permission of the donor or the family is controversial. Public concern about storage and use of tissue or organs obtained from autopsies on children in UK hospitals without parents' consent resulted in several large-scale inquiries and the 2004 overhaul of the Human Tissue Act. The new UK legislation makes it an offense to test DNA from stored bodily material without “appropriate consent,” although the Human Tissue Act allows for nonconsensual genetic testing for the benefit of a relative.1 In the cases at Alder Hey Children's Hospital, the removal and retention of organs after the death of a child caused distress to parents who were unaware that this had occurred.2 Although this was a clear failure to uphold the rights of parents and led to the new legislation to ensure that proper consent is obtained and regulations are in place, several aspects of current law and guidelines remain unclear.
Sexton AC, Metcalfe SA. Disclosing Genetic Research Results After Death of Pediatric Patients. JAMA. 2008;300(14):1693-1695. doi:10.1001/jama.300.14.1693