Families of children with cancer support research using tissue samples left over after operations, a new study has found.
Contrary to reports of a public crisis of confidence in tissue-based research, a team led by the University of Leicester found that all 20 children and 59 parents they interviewed would be happy to consent to donating samples to a tissue bank for childhood cancer research. The study was funded by the Economic and Social Research Council (ESRC) and the Wellcome Trust.
"These findings show that anxieties about asking families to donate tissue for research may be misplaced? said Professor Mary Dixon-Woods, one of the authors of the study published in Biosocieties.
"Media reporting has often given the impression that the public is gravely concerned about any use of tissue for research, even when the tissue is from living donors and is being removed as part of treatment. Our study shows that it is wrong to think of the public as having a single unified opinion."
As long as the right safeguards were in place, children with cancer and their parents were keen to donate material left over from operations for research because they saw it as a way of helping other people, the study reports. One mother interviewed for the study commented that generations of previous children taking part in cancer research had helped to ensure her child's survival: "without them, we might not be here now", she said.
"Research using tissue samples is vital to developing improved ways of diagnosing and treating cancer in children," said Professor Kathy Pritchard-Jones of the Institute of Cancer Research. "It is essential that unfounded claims about 'what the public thinks' do not get in the way. This study shows that healthcare staff should feel confident about approaching families to ask them to think about donating samples for research."
The study reports that, historically, research on tissue samples has always depended on public support. Historical research by Dr Duncan Wilson of the University of Manchester shows that what counted as public opinions were far more diverse than is commonly supposed.
"Using tissue samples in modern day research is just the same - it can't happen in opposition to public values", said Professor Dixon-Woods. "People are happy to donate tissue, but researchers do need to recognise the values and expectations of people who donate material." Although 26 participants in the study said they would be content for samples to be used for research without their consent, a majority (45) did wish to be asked for consent. Families in the study said they would consent to tissue banking because they trusted the staff who asked them, they felt that regulation would protect them from any untoward use of the samples, and that the samples would be used for the good of the childhood cancer community.
"It is important that everything is done to secure this trust," said Professor Pritchard-Jones. "That doesn't always mean highly bureaucratic regulation, but it does mean listening to families and being sensitive to their needs, and ensuring that any use of samples in research is ethical."
1. This study was carried out by a team from the Universities of Leicester and Manchester and the Institute of Cancer Research. It was funded by the Economic and Social Research Council under the Science in Society Programme and by the Wellcome Trust.
2. Forty-two families took part in the study. Twenty children with cancer aged between 8 and 18 and 59 parents were interviewed. The children were undergoing treatment at seven hospitals across the UK.
3. Families were asked about their views on consenting to tissue samples "left over" after biopsies and other operations being donated to a tumour bank for childhood cancer research. The tumour bank, established in 1998, provides a national network of stored tissue of samples from children with cancer, and is run by the Childhood Cancer and Leukaemia Group (CCLG), a charitable organisation primarily involved in running clinical trials in cancer. Samples are only banked if consent has been obtained. Researchers may apply to use samples in research projects in the area of childhood cancer. Each project undergoes a scientific review process and must have ethical approval.
4. Allowing sub-classification of different types of malignancies is an example of the benefits of tissue-based research. For instance, neuroblastoma, a very serious childhood cancer, can now be classified into different risk types. More accurate identification of risk types in cancer is critical, because it allows aggressive cancers to be treated more aggressively, while avoiding over-treatment of children at lower risk.
Professor Kathy Pritchard-Jones, Institute of Cancer Research
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Full source: Dixon-Woods M, Wilson D, Jackson C, Cavers D, Pritchard-Jones K. (2008) Human tissue and 'the public': the case of childhood cancer tumour banking. BioSocieties 3: 57-80
The Economic and Social Research Council (ESRC) is the UK's largest funding agency for research and postgraduate training relating to social and economic issues. It supports independent, high quality research which impacts on business, the public sector and the third sector. The ESRC's planned total expenditure in 2008/09 is £203 million. At any one time the ESRC supports over 4,000 researchers and postgraduate students in academic institutions and research policy institutes. More at http://www.
The Wellcome Trust is the largest charity in the UK. It funds innovative biomedical research, in the UK and internationally, spending around £650 million each year to support the brightest scientists with the best ideas. The Wellcome Trust supports public debate about biomedical research and its impact on health and wellbeing. http://www.