Foetal and neonatal autopsy rates and use of tissue for research: The influence of ‘organ retention’ controversy and new consent process

Abstract

To examine whether the 'organ retention' controversy and new autopsy consent process had any effect on foetal and neonatal autopsy rates and on permitting the use of tissue for scientific research and education. An audit of perinatal autopsy rates in a tertiary hospital prior to (1999-2001) and subsequent to the 'organ retention' controversy (2001-2002), and the introduction of a new consenting process (2002-2004). Rates were compared also with those a decade earlier (1990-1993). Overall autopsy rates have been falling significantly between the three study periods (1999-2001 71.7%; 2001-2002 61.5%; 2003-2004 50.5%). Autopsy rates have fallen significantly between 1990-1993 and 1999-2001 (P<0.00005) and between 1990-1993 and 1999-2004 (P<0.0000001). The autopsy rates for stillbirths and neonatal deaths have fallen significantly further since the 'organ retention' controversy but not significantly so following the new consenting process. Significantly fewer autopsies are performed on foetuses less than 20 weeks gestation in recent years than a decade ago (P<0.0000001). There were more external or limited autopsies in later years (P=0.015). Permission for the use of tissue for education and research is less frequent following the 'organ retention' controversy and particularly following the introduction of the new consenting process. Perinatal autopsy rates have fallen over the past 10 years. Fewer autopsies are being performed following the 'organ retention' controversy and use of tissue for research and education is permitted even less frequently following the introduction of the new consenting process.