The blog of the 2009 – 2017 Presidential Commission for the Study of Bioethical Issues

Engaging Parents and Children Throughout Pediatric Research: A New Report from the Nuffield Council on Bioethics

Today the Nuffield Council on Bioethics (Nuffield Council), an independent bioethics advisory body in the United Kingdom, released Children and Clinical Research: Ethical Issues. The report marks the culmination of a two-year inquiry, during which the Nuffield Council received input from over 500 stakeholders – including the U.S. Presidential Commission for the Study of Bioethical Issues (Bioethics Commission).

The Bioethics Commission addressed the ethics of research with children in its March 2013 report Safeguarding Children: Pediatric Medical Countermeasure Research. In that report, the Bioethics Commission tackled the particularly complex ethical dimensions of conducting clinical trials of medical countermeasures (MCMs) – that is, clinical products and interventions used in response to chemical, biological, radiological, and nuclear terror attacks – with children. Through six recommendations to guide the ethical conduct of pediatric MCM research, the Bioethics Commission sought to navigate the tension between protecting individual children from undue risk in research and protecting all children, to the extent possible, through the fruits of research.

Throughout its analysis in Safeguarding Children, the Bioethics Commission recognized the critical importance of pediatric research to address children’s health needs. It expressed “an unwavering commitment to safeguard all children from unacceptable risks in research and through research that promotes their health and well-being.” (p. 105) The Nuffield Council echoed this commitment at the very outset of its report, “challeng[ing] the idea that clinical research is something from which children need to be protected and essentially excluded,” and articulating a “belief that children will be best protected from ill health, disease and the impacts of disability through a greater commitment to evidence-based care.” (p. vii)

The Bioethics Commission and Nuffield Council also fundamentally agree that pediatric research protections can be strengthened through engagement with trial participants, their families, and other stakeholders. The Bioethics Commission recognized the critical role of community engagement in pediatric MCM research to “build transparent, meaningful, collaborative, and mutually beneficial relationships among those considering or conducting research and the relevant communities.” (p. 79) Several of the Nuffield Council’s recommendations support similar engagement, for example, through the consideration of young persons’ and parents’ views in designing research. As the Nuffield Council’s Director, Hugh Whittall, explained, “by speaking to children and their families, researchers can design studies which are more suited to their needs, and ultimately more acceptable.”

In Safeguarding Children, the Bioethics Commission called for an ongoing conversation about the ethical conduct of pediatric research. Today the Nuffield Council has added its valuable voice to the discussion.

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This is a space for the members and staff of the 2009 -2017 Presidential Commission for the Study of Bioethical Issues to communicate with the public about the work of the commission and to discuss important issues in bioethics.

As of January 15th, 2017 this blog will no longer be updated but continues to be available as an archive of the work of the 2009-2017 Presidential Commission for the Study of Bioethical Issues

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