Some of the leading life sciences organisations in the UK have joined forces to issue a ‘statement of aspiration’ about the involvement of young people in research saying:
‘Collaboration between young people and commercial researchers should become an established and normal way of working. Learning from this collaboration should be actively translated wherever possible to the adult healthcare/life sciences research setting.’
The roll-call of organisations who have signed the statement includes three of the largest pharmaceutical companies in the world, the ABPI, Ethical Medicines Industry Group (EMIG), as well as the National Institute for Health Research (NIHR), Nuffield Council for Bioethics, and Health Research Authority (HRA). Other signatories are as follows:
The ground-breaking communique notes the importance of collaboration between researchers and the people whom research aims to benefit, and highlights how this is distinct from ‘market research’ and ‘one-off’ approaches by a funder. It emphasises the value that involving young people can have in particular, and notes the leadership that the UK has shown in developing this work.
The statement has its origins in the GenerationR conference – which took place at the Science Museum in 2013 – and subsequent report and recommendations which called for closer-working with industry. Work since the conference has included the setting up of a GenerationR website and last autumn’s establishment of a GenerationR alliance to bring together organisations to further the work. Not to mention initiatives by other organisations, most notably the Nuffield Council on Bioethics ‘Children in Research’ report.
The idea of a statement to be the basis of further action between the signatories was proposed at a roundtable meeting hosted by the Nuffield Council for Bioethics in April. The full report of this meeting can be found here.
Further contact details can be found at the foot of the statement.