Challenges to implementation of the new Coroners' (Amendment) Rules 2005: experience from a tertiary paediatric pathology centre

Abstract

In the UK sudden unexpected childhood deaths are referred to Her Majesty's Coroner (HMC) for postmortem examination during which small tissue samples are obtained for diagnostic purposes. Recent changes to regulate tissue use include the Coroners' (Amendment) Rules 2005. We audited the impact of these at a specialist paediatric centre. A retrospective audit of HMC tissue forms for autopsies was performed between 1 June 2005 - 31 May 2006, with regard to the options provided to, and chosen by, parents. Of 213 coronial autopsies, 178 were non-forensic. Tissue forms were submitted pre-autopsy in 25 (14%). An additional 47 were received after sending follow-up letters for a total of 72/178 (40%). Forms varied between coroners, but most failed to distinguish between blocks, slides, and other tissue samples and 6/40 (15%) forms did not specifically allow an option for research consent. Forty-three (60%) parents opted for retention, with 34 (79%) also consenting to research. Only six (8%) requested return of tissue. A simple, unified tissue disposal form and information sheet for all HMC districts, which includes appropriate options, would ensure that parents' wishes are met, to achieve best practice, maximise sample availability for positive societal outcomes such as teaching and research, and to comply with new regulations.

Prospective parental consent for autopsy research following sudden unexpected childhood deaths: a successful model

“…However, at present this system is far less effective than the consenting system used by the MRC Sudden Death Brain and Tissue Bank in collaboration with the Procurator Fiscals in Scotland 8 10. This is because of regional differences in coroners’ rules, so an amendment to HM Coroners’ rules would be required to establish a similar system in England 4 5. From a pragmatic perspective, we would propose a model for discussing all areas of research in which the HM Coroner’s Officer provides the hospital with parent contact details where appropriate at the time of referral and a bereavement nurse then contacts the family to explain the autopsy process and the expected time frames and takes oral consent for post-mortem research, such as imaging and tissue retention, prior to autopsy, which would be followed up by written consent.…”

“…Nevertheless, if parental wishes are not known within this period, the tissues taken at autopsy must be disposed of by the hospital. HM Coroners vary widely in their adoption and interpretation of the new rules4 and only in a minority of cases is the appropriate parental consent information obtained and given to the pathologist 5 6…”

“…Moreover, even in cases where HM Coroner’s Officers do provide signed consent forms, these are usually not available at the time of autopsy 5. Most prospective autopsy research requires specimens to be taken soon after death or during the autopsy; delay or improper processing will diminish or even abolish their value for research purposes 7 8…”

Ethical Issues Surrounding the Research Use of Forensic Samples in Japan

“…Pediatric cases present unique issues such as sudden infant death syndrome [9,10]. A recent survey of public attitudes regarding the use of residual newborn screening specimens indicates a supportive response to research use for forensic studies.…”

Organ retention and communication of research use following medico-legal autopsy: a pilot survey of university forensic medicine departments in Japan

“…In addition, it was stipulated that they must inform families that organs/tissues of the deceased are being retained to investigate the cause of death. Coroners were required to confirm the families’ wishes and requests regarding the restoration of organs and/or tissues or their donation for educational research 7 8. In particular, because researchers also had to obtain the consent of families before using stored samples for education and research, coroners were additionally required to obtain appropriate consent according to autopsy protocol.…”