Elsevier

Social Science & Medicine

Volume 65, Issue 11, December 2007, Pages 2272-2283
Social Science & Medicine

Competent children? Minors’ consent to health care treatment and research

https://doi.org/10.1016/j.socscimed.2007.08.005Get rights and content

Abstract

This paper concentrates on controversies about children's consent, and reviews how children's changing status as competent decision makers about healthcare and research has gradually gained greater respect. Criteria for competence have moved from age towards individual children's experience and understanding. Uncertain and shifting concepts of competence and its identification with adulthood and childhood are examined, together with levels of decision-making and models for assessing children's competence. Risks and uncertainties, methods of calculating the frequency and severity of risks, the concept of ‘therapeutic research’ and problems of expanding consent beyond its remit are considered. The paper ends by considering how strengths and limitations in children's status and capacities to consent can be mirrored in researchers’ and practitioners’ own status and capacities. Examples are drawn from empirical research studies about decision-making in healthcare and research involving children in the UK.

Introduction

This paper relates consent to children's bodies, health and illness, their views and behaviours, (dis)abilities and experiences, their rights, relationships and status. The paper mainly considers current English/Commonwealth law and guidance, but also refers to some international influences and to historical examples that are basic to, or have developed towards, present policy. Guidance in law and ethics on healthcare and research has variously either ignored children (Nuremberg, 1947) or intensely discussed them (US, 1997; RCPCH, 2000; BMA, 2001; MRC, 2004), carefully protected them or entered them into high risk research (Beecher, 1966; Pappworth, 1967; Sharav, 2003), regarded them as either the last (RCPCH, 2000) or as the first (Nuffield, 1992) group to take part in research. This paper concentrates on controversies about children's consent. It reviews children's status and rights to consent, various definitions and assessments of their competence, and calculations of risk. Consent to healthcare treatment and consent to research often overlap when research investigates treatment, and the concept of ‘therapeutic research’ and the limited remit of consent are critically analysed. Finally, children's status and capacities to consent are reviewed as possibly a reflection, mirror image, or indicator of practitioners’ and researchers’ own status and capacities.

Section snippets

Beyond an age of consent: the law

There is a movement beyond an arbitrary ‘age of consent’ towards respect for individual children's abilities. This is partly because, as will be illustrated in later sections, contingencies such as experience and ability can be more salient than age to a child's competence. The statutory age of consent to treatment varies considerably between countries from 12 to 19 years, illustrating how arbitrary it can be. However, formerly the child's status, as silent infant or articulate young adult, has

Concepts of competence

Adult research subjects are assumed to be competent unless they obviously show serious incompetence. Researchers tend to start from a presumption of incompetence with children, a double disadvantage for children since it is hard for them to challenge the strong views of the relatively more powerful and confident adults, and it is harder to demonstrate competence than incompetence, which can fairly easily seem to be proved by one or two mistakes or misunderstandings. The following sections

Discussion: reflections on children's consent

(Practitioners and researchers will be referred to as professionals.) This final section suggests that main themes in this paper relate to professionals’ own reflexive understanding and also illustrate how professionals’ and children's status and competencies can reflect and either mutually reinforce or undermine one another. Children's consent, as with vulnerable people of all ages such as those with learning or mental health difficulties, prisoners or asylum seekers, can raise extra ethical

Acknowledgements

I am grateful to all the children and adults who took part in and otherwise worked on or helped with the series of studies on consent, also to the six reviewers who commented on this paper.

References (65)

  • P. Alderson et al.

    Parents’ experiences of sharing neonatal information and decisions: Consent, risk and cost

    Social Science & Medicine

    (2006)
  • P. Alderson

    Choosing for children: parents’ consent to surgery

    (1990)
  • P. Alderson

    Children's consent to surgery

    (1993)
  • P. Alderson et al.

    The participation rights of premature babies

    International Journal of Children's Rights

    (2005)
  • P. Alderson et al.

    Access and multi-centre research

    Monash Bioethics Review

    (1995)
  • P. Alderson et al.

    Healthcare choices: Making decisions with children

    (1996)
  • P. Alderson et al.

    Ethics, social research and consulting with children and young people

    (2004)
  • P. Alderson et al.

    Children as partners with adults in their medical care

    Archives of Disease in Childhood

    (2006)
  • Current issues in paediatric clinical trials

    (2004)
  • H. Als

    Reading the premature infant

  • F. Baughman

    The ADHD Fraud: How psychiatry makes ‘patients’ out of normal children

    (2006)
  • H. Beecher

    Ethics and clinical research

    New England Journal of Medicine

    (1966)
  • M. Bluebond Langner

    The private worlds of dying children

    (1978)
  • Consent, rights and choices in healthcare for children and young people

    (2001)
  • Guidelines to aid ethical committees considering research involving children

    Archives of Disease in Childhood

    (1980)
  • M. Brazier

    Protecting the vulnerable: Autonomy and consent in healthcare

    (1992)
  • N. Brown et al.

    New medical technologies and society: Reordering life

    (2004)
  • A. Buchanan et al.

    Deciding for others

    (1989)
  • I. Bynoe

    Consent and the law

  • Cardozo (Judge). (1914). In Schloendorff v. Society of New York Hospitals....
  • (1989)
  • Are experimental treatments for cancer in children superior to established treatments? British Medical Journal

    (2005)
  • CMCE-Committee of Ministers of the Council of Europe. (1990). Recommendation (No....
  • Local Research Ethics Committees

    (1991)
  • Welfare of children and young people in hospital

    (1991)
  • M. Donaldson

    Children's Minds

    (1978)
  • EC—European Clinical Trials Directive (2001/20/EC) implemented in UK in The Medicines for Human Use (Clinical Trials)...
  • ECM—Every Child Matters. (2003). London: Stationery...
  • ECM—Every Child Matters Programme (2006). ‘Working Together to Safeguard Children’....
  • H. Gardner

    The unschooled mind

    (1993)
  • W. Gaylin et al.

    Who speaks for the child?

    (1982)
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