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J Med Ethics 37:544-551 doi:10.1136/jme.2010.040220
  • Research ethics
  • Paper

Why do parents enrol their children in research: a narrative synthesis

  1. Annette Boaz2
  1. 1King's College London, MRC & Asthma UK Centre in Allergic Mechanisms of Asthma, Division of Asthma, Allergy and Lung Biology, Guy's and St Thomas' NHS Foundation Trust, London, UK
  2. 2Division of Health and Social Care Research, Kings College London, London, UK
  1. Correspondence to Helen R Fisher, Health and Social Care Research, 9th Floor, Capital House, 42 Weston Street, London SE1 3QD, UK; helen.r.fisher{at}kcl.ac.uk
  • Received 13 September 2010
  • Revised 28 January 2011
  • Accepted 2 March 2011
  • Published Online First 8 April 2011

Abstract

Objective Recent legislation mandating the inclusion of children in clinical trials has resulted in an increase in the number of children participating in research. We reviewed the literature regarding the reasons parents chose to accept or decline an invitation to enrol their children in clinical research.

Methods We searched for qualitative studies, written in the English language that considered the experiences of parents who had been invited to enrol their children in research. SCOPUS and Web of Knowledge electronic databases and reference lists of retrieved articles and review papers were searched. Retrieved articles were synthesised using the narrative synthesis method.

Results 16 qualitative studies exploring the experiences of parents living in five countries whose children had a range of health conditions of varying severity were included. The health status of the child appeared to influence parents' reasons for participation. Parents whose children had life threatening conditions often considered they had no choice but to participate and many welcomed the innovation offered through research participation. Such parents also viewed the risks of research less negatively than those whose children were healthy or in the stable stage of a chronic condition. This raises questions regarding the voluntariness of informed consent by such parents.

Conclusions A tailored approach is needed when discussing research participation with parents of eligible children. While parents of healthy children may be more open to discussions of altruism, those whose children have life threatening illnesses should be given adequate information about the alternatives to, and risks of, research participation.

Footnotes

  • Funding HF and AB received financial support from the Department of Health via the NIHR Comprehensive Biomedical Research Centre award to Guy's and St Thomas' NHS Foundation Trust in partnership with King's College London and King's College Hospital NHS Foundation Trust.

  • Competing interests None.

  • Provenance and peer review Not commissioned; externally peer reviewed.