Children leading the way in unexpected places

Given the international reach of our 2015 report Children and clinical research: ethical issues, it’s surprising to recall that at the start of the project, we had a serious discussion as to whether we could justify extending the scope of the project beyond the borders of the UK. While the Council’s terms of reference are not limited specifically to matters of UK concern, both our major sources of expertise, and our spheres of policy influence (at least as regards regulatory recommendations) are situated within the UK. Moreover, in seeking to look (and potentially exert influence) further afield, there were dangers of both actual and perceived tokenism. Yet a decision not to seek that wider perspective would have been to ignore not only the collaborative and international nature of contemporary research, but also the critical fact that some of the world’s most urgently needed research relates to the health of young children living in low income environments – and that the UK is a significant funder in this area.

The Working Party grappled with these challenges throughout the project. We were fortunate in benefiting from the wealth of expertise brought to our project by two Working Party members from a major Kenyan research centre, who provided valuable insights into research with children carried out in circumstances very different from those prevailing in the UK (read their blog post about it). Clearly these contributions could not be seen as offering a representative or definitive ‘low-income country’ or ‘non-UK’ perspective. However through this work we came into contact with a network of major research centres in Africa and South East Asia, leading to wide-ranging input into our work.  Among these activities, I was fortunate to attend the Global Health Bioethics Network ‘summer school’ in Blantyre, Malawi in July 2014 alongside the Chair of our Working Party Bobbie Farsides (read her blog post about it).

One of the questions we were particularly keen to explore in the report was around different social and cultural understandings of ‘childhood’. How might these affect our developing hypothesis that a key element of ethically conducted research with children would be the creation of genuine partnerships between professionals, children and young people, and their families? We debated this question in Blantyre with researchers working not only in Malawi, Kenya and South Africa, but also in Thailand, Vietnam and Cambodia. Important issues were raised with respect to the difficulties of finding ways for children’s voices to be heard in societies where respect for elders within the family is deeply embedded, and where an invitation to young people to express views that might run contrary to those of adults could be seen as highly disrespectful.

Members of the Cambodian YPAG

Despite these concerns about the cultural appropriateness of children’s activism, our presentation in Blantyre of the role of the ‘young people’s advisory groups’ (YPAGs) established in the UK to offer children’s perspectives on research proposals, and of our ‘Youth Research Ethics Committee’ films, inspired one participant to set up such a YPAG in the Angkor Hospital For Children in Siem Reap, Cambodia. By the time of its recently celebrated first birthday, the group had conducted a hospital inspection to assess its child friendliness, and devised and implemented a patient satisfaction survey. Their future plans include reviewing clinical research proposals put forward in the Cambodia–Oxford Medical Research Unit.

The Cambodian YPAG members and their parents

Alongside the input of the research centres associated with the Global Health Bioethics Network, a couple of initially serendipitous contacts led to significant contributions from Latin America. Our online consultation was picked up by a colleague in Lima, Roxana Lescano, who kindly translated it into Spanish and facilitated responses from a number of interested researchers across the region. Subsequently, a collaboration between the Council and the Víctor Grífols i Lucas Foundation in Barcelona led to a joint workshop, and the translation into Spanish of the summary and conclusions of our report, as well as of the magazine and animation we devised for children and young people.  Further help from Roxana enabled the online training course for researchers and ethics committee members – which developed out of the report in collaboration with the Global Health Training Centre – to be made available in Spanish and English.

These various collaborations have made the analysis in our report, and in particular our ‘conceptual recommendations’ (distinct from the practical regulatory recommendations aimed at UK institutions) available and accessible to practitioners, researchers and ethics committee members in Latin America. This in turn resulted in an invitation to me to lecture in Lima last month, alongside Hans van Delden of the Council for International Organizations of Medical Sciences (CIOMs) and Carla Saenz of the Pan American Health Organization (PAHO). The occasion was a conference, hosted by the Peruvian Institute Nacional de Salud and the Colegio Medico, focussing on the ethical challenges of conducting clinical research with children, and itself a satellite meeting to a major Ministry of Health conference in which the new CIOMS guidance was to be presented.

This was an important event for researchers in Peru, because in recent years all invasive research with children has been banned, owing to concerns about exploitation. The researchers, practitioners, and ethics committee chairs present were knowledgeable and passionate about the importance of finding ways of protecting children through research, rather than from research, and very responsive to our focus on partnership and engagement. In relation to areas of research that are currently permitted with children, we heard examples of excellent practice, including one ethics committee that had itself taken the initiative to hear children’s views before approving a study, and been impressed with the quality of their input. There was eager debate on how to achieve regulatory change within Peru, and on how our work, and that of CIOMS, might support Peruvian practitioners in making their case that it is indeed possible to find ethical ways of conducting clinical research with children.

A key theme that emerged in the meeting was that of children’s willingness to act to help others in many contexts, and of how this altruism – accompanied in the context of research, by measures to ensure participants’ own protection – is something that we should be encouraging in our children, not seeking to suppress. In a passionate presentation, Carla Saenz commented on how she was often told that ‘other children’ may be altruistic, but that things were different in Peru – and cited active engagement by Peruvian children in fundraising in response to the loss of life and property caused by the recent disastrous flooding in the country as evidence to the contrary. And in strange parallels between my personal and professional life, I had more than ample evidence of this myself. While in Lima, I was staying with the Columban Fathers, who work in some of the poorest parts of the city: in particular in the shanty town of San Benito on the outskirts of Lima, initiating and supporting projects responding to malnutrition, poverty and domestic violence. Through the work of an NGO, Warmi Huasi (established and supported by the Columbans), children in San Benito have themselves become actively involved in this work, through the creation of a Children’s Council, with a ten year old girl as president. And when I visited the San Benito Saturday Reading Club hosted by Warmi Huasi, the first thing I saw were donations – from children and parents living in the most humble of surroundings – of sweets, food and toys for those who had lost their homes in the floods.

Donations for flood victims at the San Benito Saturday Reading Club

There are of course important differences in how children and adults interact in diverse cultures and communities – and just how our ‘conceptual’ recommendations relating to the ethical conduct of research with children might appropriately be implemented in different countries will vary tremendously. But I think the children of Cambodia and the children of Peru have sent a pretty strong message that they want to help shape their communities, their health, and their future – and they are more than capable of doing so.

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