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Prospective parental consent for autopsy research following sudden unexpected childhood deaths: A successful model
  1. Sudhin Thayyil (s.thayyil{at}ich.ucl.ac.uk)
  1. UCL Institute of Child Health, United Kingdom
    1. Nicola J Robertson (n.robertson{at}ucl.ac.uk)
    1. University College london, United Kingdom
      1. Angie Scales (scalea{at}gosh.nhs.uk)
      1. Great Ormond Street Hospital, United Kingdom
        1. Martin Weber (weberm1{at}gosh.nhs.uk)
        1. Great Ormond Street Hospital, United Kingdom
          1. Thomas Jacques (t.jacques{at}ich.ucl.ac.uk)
          1. UCL Institute of Child Health, United Kingdom
            1. N Sebire (sebirn{at}gosh.nhs.uk)
            1. Gt Ormond Street Hospital, United Kingdom
              1. Andrew M Taylor (a.taylor{at}ich.ucl.ac.uk)
              1. UCL Institute of Child Health, United Kingdom

                Abstract

                Background: Pessimism regarding prospectively consented paediatric autopsy research in the UK has resulted from organ retention controversies, recent changes in the Coroners' (Amendment) Rules 2005 and the Human Tissue Act.

                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 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 South of London

                Results: Of the 76 eligible HM Coroner's cases referred during the study period, permission to contact parents (provided by HM Coroners' Office) was obtained for only 32 cases (42%). The research sister contacted 32 parents during the study period of which 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.

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