Prospective parental consent for autopsy research following sudden unexpected childhood deaths: a successful model
- 1UCL Institute of Child Health, London, UK
- 2UCL Institute of Women’s Health and University College London Hospitals, London, UK
- 3Paediatric Intensive Care Unit, Great Ormond Street Hospital for Children, London, UK
- 4Great Ormond Street Hospital for Children, London, UK
- 5Neural Development Unit, UCL Institute of Child Health and Great Ormond Street Hospital for Children, London, UK
- 6Department of Histopathology, Great Ormond Street Hospital for Children and UCL Institute of Child Health, London, UK
- 7Cardiovascular Unit, UCL Institute of Child Health and Great Ormond Street Hospital for Children, London, UK
- Dr Sudhin Thayyil, Centre for Cardiovascular Imaging, UCL Institute of Child Health and Great Ormond Street Hospital for Children, Great Ormond Street, London WC1N 3JH, UK;
- Accepted 6 January 2009
- Published Online First 12 March 2009
Background: Organ retention issues, recent changes in the Coroners’ (Amendment) Rules 2005 and the Human Tissue Act have resulted in pessimism regarding prospective consent for paediatric autopsy research in the UK.
Objectives: To examine the feasibility and acceptability of a prospective telephone consenting model for post-mortem magnetic resonance (MR) imaging research in HM Coroners’ cases.
Design: Following each autopsy referral from the HM Coroner, permission to contact the family for research was requested. A family liaison sister, with experience in dealing with bereaved families, then contacted the parents by telephone, explained the study and obtained oral, and then written consent for post-mortem imaging.
Setting: London and an area south of London.
Results: Of 76 eligible HM Coroners’ cases referred during the study period, permission to contact parents (provided by the HM Coroners’ Office) was obtained for only 32 cases (42%). The research sister contacted 32 parents during the study period of whom 31 (96.8%) gave oral research consent. “Helping other parents in the future” and “the importance of post-mortem research” were the main reasons for parents wanting to participate in research.
Conclusions: Prospective consenting for HM Coroners’ cases for research is feasible in children, and can be done ethically by parental consenting via telephone contact before autopsy by appropriately trained staff. However, close co-ordination between mortuary staff, HM Coroners, research staff and medical staff is required. This model may be useful in performing post-mortem research in HM Coroners’ cases and in developing paediatric tissue and brain banks in the UK.
Competing interests: None.
Funding: The work for this project is funded by the UK Department of Health Policy Research Programme (grant no. 0550004) and the British Heart Foundation (grant no. CI/05/010); neither funding body had any role in the analysis of data, results or conclusions of the study. The manuscript has been reviewed and approved by the Department of Health (UK). AMT is funded by the UK National Institute of Health Research (NIHR; grant no. SRF/08/01/018). NJR and NJS are funded by the Higher Education Funding Council for England (HEFCE). This work was undertaken at GOSH/ICH and UCLH/UCL who both received a proportion of funding from the UK Department of Health’s NIHR Biomedical Research Centres funding scheme.
The MaRIAS (Magnetic Resonance Imaging Autopsy Study) Collaborative Group consists of the following members: Alan Bainbridge (Medical Physics, UCL), Jocelyn Brookes (Radiology, UCLH), Lyn Chitty (Fetal Medicine, UCLH/ICH), Kling Chong (Paediatric Neuroradiology, GOSH), Andrew Cook (Cardiac Morphology, ICH/GOSH), Enrico de Vita (Medical Physics, UCL), Brian Harding (Paediatric Neuropathology, GOSH), Tom Jacques (Paediatric Neuropathology, GOSH), Rod Jones (Research MR Radiographer, ICH/GOSH), Mark Lythgoe (High field Imaging, Centre for Advanced Biomedical Imaging, UCL), Wendy Norman (Research MR Radiographer, ICH/GOSH), Oystein Oslen (Paediatric Chest and Abdomen Imaging, GOSH), Cathy Owens (Paediatric Chest and Abdomen Imaging, GOSH), Amaka Offiah (Paediatric Musculoskeletal MR, GOSH), Nikki Robertson (Neonatology, UCL/UCLH), Tony Risdon (Paediatric Forensic Pathology, GOSH), Neil Sebire (Perinatal and Paediatric Pathology, ICH/GOSH), Rosemary Scott (Perinatal Pathology, UCLH), Dawn Saunders (Paediatric Neuroradiology, GOSH), Silvia Schievano (Medical Engineering, ICH), Angie Scales (Family Liaison Sister, GOSH), Andrew Taylor (Principal Investigator, Centre for Cardiovascular Imaging, ICH/GOSH), Sudhin Thayyil (Centre for Cardiovascular Imaging, ICH/GOSH), Angie Wade (Trial Statistician, ICH). GOSH, Great Ormond Street Hospital for Children; ICH, UCL Institute of Child Health; UCL, University College London; UCLH, University College London Hospitals.
Ethics approval: The GOSH-ICH Research Ethics Committee approved this study.