Tissue Retention: Coroners Rules Not Being Followed, UK
New research shows that in the majority of cases (60%) following post-mortem examination on behalf of HM Coroner, bereaved parents are either not asked what they want done with material removed from their babies during autopsy or their wishes are not communicated to the pathologist performing the autopsy.
Following public inquiries into organ retention at Alder Hey and Bristol, new rules were introduced on 1 June 2005 requiring coroners to seek parental consent for one of three options with regard to tissues or organs removed:
1) disposal by the pathologist,
2) retention for research or other purposes, or
3) return of the material to the relatives.
It is the coroner's duty to inform the pathologist of the parents' wishes.
But in a paper* by Weber et al, published in the journal, Medicine, Science and the Law, of 178 autopsies performed by pathologists at Great Ormond Street Hospital in the year following the new rules, coroners' instructions were submitted in only 25 (14%) cases.
Following further letters to the coroner from the pathologist, another 47 (26%) provided instructions, for a total of 40%. Of the instructions submitted, there was lack of clarity: most did not distinguish between tissue samples and whole organs, in 6 (15%) cases the coroner did not offer the parent the option of retention for research purposes, in 4 cases the retention and disposal options were combined as one, and in 7 other cases parents ticked both the retention and the disposal options.
Of the 72 cases where parent wishes were communicated to the pathologist, over half (60%) consented to retention of material by the pathologist, and of those the large majority (79%) consented to research use. Only 6 families (8%) requested that all materials be returned to them after the autopsy.
Joyce Epstein, director of the Foundation for the Study of Infant Deaths, stated: "These are worrying findings. It's important that someone - coroner's officer, paediatrician or other suitable professional - sits down with the parents and helps them understand what can happen to their baby's tissues.
"FSID is particularly concerned that parents are being denied the opportunity to donate tissues for research and urges that all parents are given that option. It's their right."
Dr Neil Sebire, Paediatric Pathologist at Great Ormond Street hospital, stated: "The underlying cause of the majority of sudden infant deaths still remains undetermined even following post-mortem examination. The subsequent use of such tissue samples for ethically approved research into the mechanisms of infant death therefore remains of vital importance to develop our understanding in this area.
"It is worrying that these samples are being destroyed, or prohibited from being used to investigate possible future medical advances, simply due to lack of appropriate systems and documentation in these Coroner's cases. If no confirmation of parent's wishes is received, according to the new guidelines, these tissues may be disposed of, despite the data suggesting that the majority of parents from whom we received documentation of their wishes, agree to its use in cot-death research."
Carrie Langford, a bereaved parent whose son Merrick died as a cot death in 1983, said: "It was immensely rewarding, and gave me and my family great comfort, to know that Merrick's tissue samples had been retained to help prevent future deaths. As a bereaved parent, I think it is so important for parents to be given a full explanation of their rights about the retention of tissue samples from their baby's post mortem.
"These samples may lead in future years, and in light of new knowledge, to an explanation of their baby's death. Or, from a donation to a teaching or research project, they may lead to knowledge that will prevent other families from suffering this tragedy."
*Weber MA, Epstein J, Simons J, Malone M, Ashworth M, Sebire NJ. Challenges to implementation of the new Coroners' (Amendment) Rules 2005: experience from a tertiary paediatric pathology centre. Med Sci Law. 2007 Oct;47(4):293-8.
Notes:
The Foundation for the Study of Infant Deaths (FSID) is the UK's leading baby charity working to prevent sudden infant deaths and promote infant health. FSID funds research; supports bereaved families; promotes baby care advice; and works to improve investigations when a baby dies.
FSID policy on tissue retention
FSID, along with other medical organisations, has long campaigned for routine retention of a defined set of tissues in all cases of sudden unexplained infant deaths, for diagnostic purposes only. Parents should of course be informed that tissues were retained, and there should be no retention of tissues for research purposes without parental consent.
The main question asked by parents, is "Why? Why did my baby die?" and if small tissue samples were automatically retained it would allow for possible explanations of deaths when advances in medical science occur.
Retention of tissue would also be valuable in case another child should die in the family, to check for genetic disease. If tissues were available it could be helpful if confusion ever arose at some future time as to whether the death had been natural.
Added to these reasons, the current study now provides evidence that the system of asking for consent for retention of tissues is not working.
FSID emphasises that we advocate tissue retention (not whole organs) only for diagnostic purposes, and with parents informed of what is happening; we strongly support the need to seek parent consent before using tissues for research.
http://www.sids.org.uk
Þesutului Pãstrarea: Coroners norme care nu sunt fiind urmat, Marea Britanie - Tissue Retention: Coroners Rules Not Being Followed, UK - articole medicale engleza - startsanatate