This paper briefly reviews highlights from decades of debates in medicine, law, bioethics, psychology and social research about children’s and parents’ views and consent to medical treatment and research. There appears to have been a rise and later a fall in respect for children’s views, illustrated among many examples by a recent book on the zone of parental discretion, which is reviewed. A return to greater respect for children’s views and consent is advocated.
United States National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Research Involving Children: Report and Recommendations. Washington, DC: DHEW, 77-0004 & 5, 1977.
7.
NicholsonR. Medical Research with Children: Ethics, Law and Practice, Oxford, UK: Oxford University Press, 1985.
8.
Medical Research Council 1962-3 Annual Report. London: MRC, a standard not revised until the 1991/1992 Annual Report.
9.
AldersonP. ‘Competent children? Minors’ consent to health care treatment and research. Soc Sci Med2007; 65: 2272–2283.
10.
GilliganC. In a Different Voice, Cambridge, MA: Harvard University Press, 1982.
11.
JamesAProutA. Constructing and Reconstructing Childhood, London: RoutledgeFalmer, 1990. is a founding text.
12.
Family Law Reform Act, 1969.
13.
Later clarified at least in Scottish law, Age of Legal Capacity Act Scotland, 1991, S 2.4 as the child being deemed competent in the view of the treating doctor,13 and extensively discussed by English lawyers such as Kennedy16 and Montgomery.24.
14.
Gillick v West Norfolk & Wisbech AHA [1985] 3 ALL 423.
15.
Hewer v Bryant [1970] 1 QB 357 at 369.
16.
Endorsed by such leading lawyers as Kennedy I. Treat Me Right. Oxford: Clarendon Press, 1988.
17.
FreemanM. Children’s Health and Children’s Rights, Leiden: Martinus Nijhoff, 2006.
18.
For example, Weisleder, P. Inconsistency among American States on the age at which minors can consent to substance abuse treatment. J Am Acad Psych Law 2007; 35: 317-322.
The four levels were identified in Alderson P and Montgomery J. Health Care Choices: Making Decisions with Children. London: IPPR, 1996.
23.
In re R (A Minor) [1991] WLR 3 592; In re W [A minor) [1992] WLR 3 758-782.
24.
Among several reviews of the controversies is Montgomery J. Parents and children in dispute: Who has the final word? J Child Law 1992; April: 85-89.
25.
These and other intergenerational changes are reviewed at length in Alderson P. The Politics of Childhoods Real and Imagined. London: Routledge, 2016.
26.
UNICEF. Report Card 13: Fairness to Children: A League Table of Inequality in Child Well-being in Rich Countries, Florence: Innocenti, 2016.
27.
For example, Guggenheim M. What’s Wrong with Children’s Rights. Cambridge, MA: Harvard University Press, 2005, thoroughly criticised by Freeman M. Review essay: What’s right with rights for children. Int J Ch Rights 2006; 14: 89-98.
28.
RossLF. Families and Health Care Decision Making, New York, NY: Oxford University Press, 1998.
29.
AldersonPChildren’s consent and ‘assent’ to health care research. In: FreemanM (ed.). Law and Childhood Studies, Oxford, UK: Oxford University Press, 2012, pp. 174–189.
30.
Association of the British Pharmaceutical Industry. Current Issues in Paediatric Clinical Trials, London: ABPI, 2004.
31.
European Regulation (EC). Medicinal Products for Paediatric Use, 1901/2006 came into binding force in all EC countries in January 2007.
32.
BiggsH. Competent minors and healthcare research: autonomy does not rule, okay?Clinical Ethics2009; 4: 176–180.
33.
American Association of Pediatrics. Informed consent, parental permission and assent in pediatric practice (RE9510). Pediatrics1995; 95: 314–317.
WheelerR. Gillick or Fraser? A plea for consistency over competence in children: Gillick and Fraser are not interchangeable. BMJ2006; 332: 807–807.
37.
GillamL. The zone of parental discretion: an ethical tool for dealing with disagreement between parents and doctors about medical treatment for a child. Clin Ethics2016; 11: 1–8.
38.
FeinbergJ. Harm to Others, New York, NY: Oxford University Press, 1984.
39.
McDougallRDelanyCGillamL. When Doctors and Parents Disagree: Ethics, Paediatrics and the Zone of Parental Discretion, Sydney, Australia: Federation Press, 2016.
40.
Ref 39, p.20.
41.
Department of Health. Mental Health Act 1983 Revised Code of Practice, London: The Stationery Office, 2015. Chapter 19, 21–43, n.b. 19.39.
42.
AldersonP. Choosing for Children: Parents’ Consent to Surgery, Oxford, UK: Oxford University Press, 1990.
43.
Chapters in Freeman M. (ed.) Law and Childhood Studies. Oxford: Oxford University Press, 2012, illustrate the relevance to, for example, Australia New Zealand and Canada.
44.
Ref 49, p.15.
45.
ParensE. Surgically Shaping Children: Technology, Ethics and the Pursuit of Normality, Baltimore, MD: Johns Hopkins University Press, 2006.
46.
ClarkeA. The genetic testing of children. J Med Genet1994; 31: 785–785.
