This morning the Nuffield Council on Bioethics published its report: Children and research: ethical issues calling for a change in research culture to enable young people to shape how research is ‘prioritised, designed and reviewed.’
In what amounts to a ‘call to arms’ the report urges funders, clinicians, researchers and ethicists to work together and, most importantly, with young people and parents, to overcome the barriers that stand in the way of young people being involved in research.
The report contains a comprehensive set of recommendations proposing a number of changes in practice and approach to set in train this culture change: child health research should become a core part of what the NHS does it says; Research Ethics Committees (RECs) should require researchers to demonstrate that they have involved young people in putting together research proposals; they should also draw on relevant external expertise to strengthen how they review such proposals and the quality of the decisions they take and; the choices that children make about taking part in research should be listened to and respected.
“As soon as children are able to express their opinions, or give their views, we should respect them as individuals by listening to them. Parents will always be concerned with their child’s well-being, and there may be times when those concerns override a child’s wishes,” Dr Helen Sammons, member of the Working Party, and general paediatrician at the Derbyshire Children’s Hospital is quoted as saying in Nuffield’s press release today. “However, in most cases, researchers should seek to get the agreement of both children and their parents to take part in research. Children don’t suddenly become adults overnight at the age of 18, but develop their ability to make decisions with their parents’ support.”
That such a respected body should choose to investigate this issue, spend two years undertaking the work and involve 500 professionals, parents, children and young people, in the UK and internationally says everything about the importance of this issue but also, in truth, about Nuffield.
The report notes the UK’s leadership in involving young people in research – from the work of the NIHR Medicines for Children Research Network (now known as the Clinical Research Network (Children)) to the James Lind Alliance Priority Setting Partnerships approach. Not to mention an increasing number of local and regional projects. You can read about some of these in a recently published special edition of the INVOLVE Newsletter. Readers of this blog will also remember the statement made by the Chief Medical Officer (CMO), Professor Dame Sally Davies in her 2013 annual report urging greater involvement of young people in all relevant clinical studies.
When I visit other countries our partnership with young people in research is often pointed to as being enlightened and highly influential. The challenge for the future is not just in building and improving upon this work as Nuffield rightly says, but in engendering a collaborative approach nationally that is focused on taking forward a number of key priorities and in making research involving young people a priority for others.
My editorial comment is that this will require committed and visible leadership across all sectors in the health research system (public, charity, industry, higher education, schools) to give this agenda the political impetus it needs. I can promise you that the conversation about how we achieve this is active and vibrant and I hope I will be able to report more before not too long about where this might lead to.
It often surprises people how little we know about childhood diseases because of a lack of research and the extent to which doctors have to rely on their professional expertise and judgement to adopt and adapt those medicines typically used for adults. That can not be acceptable in a modern health service. Partnership with young people is fundamental to how we change it.
The Chair of the Nuffield Council on Bioethics Working Party and Professor of Bioethics at Brighton and Sussex Medical School, Professor Bobbie Farsides has said today: ‘It will always be easier to say ‘no’ to research with children on the grounds that it’s too difficult, but we should challenge the idea that it is acceptable to continue to offer healthcare to children without seeking to improve the evidence base for many of the treatments provided.’
As an aside you might be interested to support the evidence gathering process, the Council carried out a project on the involvement of children in clinical research, by facilitating a mock Youth-Research Ethics Committee (Youth-REC) with a group of young people from a junior school, secondary school, and sixth form college in the autumn of 2013 in the Brighton area. Children and young people were given a mock research protocol which focused on a novel way of identifying the most appropriate treatment for childhood asthma. The film captures the discussions of the young people at each school, and their thoughts on the protocol.
Videos and a report of the project are available online: http://nuffieldbioethics.org/project/children-research/films-young-peoples-perspectives-clinical-ethics-reviews/