Consent for samples to be used for research

This year we will be pushing even harder than ever for all parents whose child has been diagnosed with cancer to be asked to give their consent for their child’s tissue/ fluid samples and data to be used for research purposes. We are in a ludicrous situation where parents are happy to give their consent but are not asked.
We are calling for the requesting of consent from all parents as early as possible. There is currently a lack of certain samples purely because consent has not been requested. A lack of samples results in delays in research and/or reduced research activity.
During 2019 the NHS are supposed to be rolling out two initiatives which, if successfully implemented will dramatically improve the requesting of consent from parents. The first of these initiatives is the NHS Genomic Testing programme. The programme has acknowledged that consent for the data resulting from genomic testing is vital for research. The second is a new service specification for Children’s Cancer Networks. This new specification includes the requesting of consent from parents. However, both of these initiatives only cover NHS England and do not include the devolved nations.
Paediatric oncology research has a huge dependence on the availability of samples. Without access to samples the research that will benefit children in the future simply will either take longer or not take place at all. We hope you agree with us that this is an important issue that needs immediate resolution so we will do everything we can to put pressure on NHS England to implement both initiatives at the earliest possible moment.