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Effect of media portrayals of removal of children's tissue on UK tumour bank

BMJ 2005; 331 doi: http://dx.doi.org/10.1136/bmj.331.7513.401 (Published 11 August 2005) Cite this as: BMJ 2005;331:401
  1. Clive Seale, professor of sociology ([email protected])1,
  2. Debbie Kirk, research associate2,
  3. Martin Tobin, senior lecturer in genetic epidemiology2,
  4. Paul Burton, professor of genetic epidemiology2,
  5. Richard Grundy, professor of paediatric neuro-oncology and cancer biology3,
  6. Kathy Pritchard-Jones, professor of childhood cancer biology4,
  7. Mary Dixon-Woods, senior lecturer in social science and health2
  1. 1 School of Social Sciences and Law, Brunel University, Uxbridge, Middlesex UB8 3PH
  2. 2 Department of Health Sciences, University of Leicester, Leicester LE1 6TP
  3. 3 Children's Brain Tumour Research Centre, University of Nottingham, Queen's Medical Centre, Nottingham NG7 2UH
  4. 4 Children's Department, Royal Marsden Hospital and Institute of Cancer Research, Surrey SM2 5PT
  1. Correspondence to: C Seale
  • Accepted 15 May 2005

Analysis of newspaper reporting shows how media scandals can affect scientific research, even when the research is not directly linked to the scandal

Introduction

The consequences of controversies surrounding organs removed and retained from children after postmortem examination in the United Kingdom1 2 have been felt in diverse areas. The most obvious of these is pathology. Morale and recruitment of pathologists have been adversely affected,3 4 and rates of autopsy have fallen from already declining rates.4 Beyond pathology, levels of organ donation for therapeutic purposes such as transplantation have also fallen.5-7 Such effects may occur because, fuelled by mass media reporting, the public does not readily distinguish between organ retention and other uses of human tissues.8 Might there be links between media reporting and donation of tissues from children for ethically approved scientific research?

Tumour bank

The UK Children's Cancer Study Group tumour bank, established in 1998, provides a national network of stored tissue samples from children with cancer treated at the 22 group centres. Tumour banks rely on donations of tissue, taken with appropriate consent, to conduct biological research aimed at improving diagnosis and treatment of cancer. Samples are obtained at the time of diagnostic or therapeutic interventions. Registration of a tissue sample requires several steps and resources, including a trained healthcare professional to approach families for consent, a pathologist with appropriate technical support to identify and store tissue, and administrative support. Researchers may apply to use samples in research projects in childhood cancer. Each project is scientifically reviewed and must be approved by a multicentre research ethics committee.

Role of the UK press

We explored the role of UK newspapers in reporting and generating controversies relating to removal of human material from children for research purposes and the association of such reporting with rates of registrations of tissue in …

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