HEAL UoS

HEAL cited in NCOB Report on ‘Children and clinical research: ethical issues’

In 2015, Gratuitous self-promotion, public consultations, Research ethics on September 7, 2015 at 9:00 am

We’re delighted to say (somewhat belatedly) that HEAL was cited in the Nuffield Council on Bioethics’ Report on ‘Children and Clinical research: ethical issues’, published in May 2015. The Children and Clinical Research Working Party was set up in 2013 with the following terms of reference:

1. To consider whether the current systems for regulating clinical research strike the right balance with respect to: Promoting understanding of childhood conditions and the availability of evidence-based treatments for children The role children themselves should play in research decisions; and The proper protection of child participants

2. To consider, as may be necessary: how it may be ensured that appropriate priority is given to research that is most likely to benefit children how the ethical acceptability of research projects should be determined, and the role of the various parties involved, including parents, in protecting children’s welfare the relevance of a child’s ‘best interests’ or capacity to ‘benefit’ in the context of consent to research, as opposed to treatment the importance of the international context any other aspects of the direct or indirect regulation of clinical research in children that may be relevant.

3. To draft a report and make recommendations as appropriate.

In order to respond to the Consultation Paper (one of a number of evidence gathering activities), HEAL members met in October 2013 to discuss and draft a co-ordinated response (in a meeting colloquially referred to as ‘Experimenting on children?’). Our response can be read here: HEAL response to NCOB Children and Clinical Research ethical issues FINAL.

HEAL’s contributions were quoted at para 2.8 in a section on Research proposed in traumatic, highly emotional, or sensitive situations:  “… research into the use of drugs or sexual relationships, where involvement of the parents or other family members may be problematic” (fn 112); and cited at para 2.10, fn 118, with regard to: ‘The challenging question of parental involvement in decisions about young people’s participation in such research was highlighted by respondents to the Working Party’s consultation both in the UK and in Africa’.

It is clear that the NCOB has actively sought to ensure the voices of children are heard as part of the consultation and the findings, from the cover of the Report (link above) provided by drawings from children on their views and perspectives on research, to short films, and in the media coverage.  One of the summary findings – that ‘research should always be carried out with children, not on children’ – may seem obvious, yet it is vitally important for children to be involved in research as subjects rather than objects if we are to treat them with the dignity and respect that we, in turn, expect as adults.

Caroline Jones

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