2009
DOI: 10.1136/adc.2008.150904
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Prospective parental consent for autopsy research following sudden unexpected childhood deaths: a successful model

Abstract: 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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Cited by 28 publications
(15 citation statements)
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“…They found that 96% of those who were approached gave consent, with 17% agreeing to whole-brain donations 6 9. Our findings are consistent with similar trials conducted on neonatal and paediatric cases 7 10–12. These studies showed that post-mortem research is highly valued by the parents and they were keen to make a contribution to research out of altruism, and to feel that their child's life was not wasted.…”
Section: Discussionsupporting
confidence: 88%
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“…They found that 96% of those who were approached gave consent, with 17% agreeing to whole-brain donations 6 9. Our findings are consistent with similar trials conducted on neonatal and paediatric cases 7 10–12. These studies showed that post-mortem research is highly valued by the parents and they were keen to make a contribution to research out of altruism, and to feel that their child's life was not wasted.…”
Section: Discussionsupporting
confidence: 88%
“…Telephone consenting has been shown to be effective in previous studies. We based our procedure on a method used successfully in two other autopsy studies 6 7. We found that, contrary to popular belief, rather than being upset or angry at such an approach, the newly bereaved next of kin viewed the process positively and no objection to being contacted by telephone was made.…”
Section: Discussionmentioning
confidence: 98%
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“…While less invasive autopsy is likely to be more acceptable to parents, it remains to be seen what proportion of parents who object to conventional autopsy, will consent for a less invasive autopsy 36 37. It is important to provide parents with accurate information about the systematic errors of a less invasive autopsy process, so that an ‘informed’ consent can be obtained, without any false reassurances.…”
Section: Less Invasive Autopsy By Postmortem Mrimentioning
confidence: 99%
“…A literature search of both MEDLINE and PsycINFO provides no exact hits, and despite the extensive international network of the present authors in the field of SIDS, they have come across no research that has systematically evaluated parents' experiences of post-mortem investigations after SIDS. However, somewhat related topics can be found, for example how parents view autopsy and organ donation [3][4][5] and how bereaved people receive death notifications in general.…”
Section: Introductionmentioning
confidence: 99%