This paper provides an introduction to ethical issues arising in children's research that takes place in school-settings. It addresses three main areas of ethical concern: the informed consent process, confidentiality, and harm and benefit. Informed consent in school settings is characterized by the involvement of multiple stakeholders, including not just researchers, parents and individual children but also school principals, teachers and the children's peer group. The added complexity of the setting has implications for the management of the informed consent process, including the decision at what point and in which manner each stakeholder group needs to be involved in the process. The presence and divergent roles of these multiple stakeholders in the school setting also have implications for addressing issues of confidentiality, especially due to the group setting in which participants take part in the research and role expectations within school settings. Harm and benefit in school-based research are of a non-physical nature; relevant areas of concern relate primarily to the potential for psychological and social harm, realistic presentation of likely benefits from research and the issue of rewards for research participation.
References
1.
HoweKRDoughertyKC. Ethics, institutional review boards, and the changing face of educational research. Educational Researcher1993; 22(9): 16–21.
2.
HoweKRMosesMS. Chapter 2: Ethics in educational research. Rev Res in Edu1999; 24(1): 21–59.
3.
AshcroftRGoodenoughTKentJWilliamsonE. Children's consent to research participation: Social context and personal experience invalidate fixed cutoff rules. Am J Bioethics2003; 3(4): 16–18.
4.
JoffeS. Rethink ‘Affirmative agreement’, but abandon ‘assent’. Am J Bioethics2003; 3(4): 9–11.
5.
LaddRE. Child assent revisited. Am J Bioethics2003; 3(4): 37–38.
6.
MillerVADrotarDKodishE. Children's competence for assent and consent: A review of empirical findings. Ethics & Behavior2004; 14(3): 255–295.
7.
MorrowVRichardsM. The ethics of social research with children: An overview. Children & Society1996; 10(2): 90–105.
8.
BaylisFDownieJKennyN. Children and decision making in health research. IRB: Ethics and Human Research1999; 21(4): 5–10.
9.
BrayL. Developing an activity to aid informed assent when interviewing children and young people. J Res Nurs2007; 12(5): 447–457.
10.
BruzzeseJ-MFisherCB. Assessing and enhancing the research consent capacity of children and youth. Appl Devel Sci2003; 7(1): 13–26.
11.
DiekemaDS. Taking children seriously: What's so important about assent?Am J Bioethics2003; 3(4): 25–26.
12.
FordKSankeyJCrispJ. Development of children's assent documents using a child-centred approach. J Child Hlth Care2007; 11(1): 19–28.
13.
TaitAVoepel-LewisTMalviyaS. Presenting research information to children: a tale of two methods. Anaesth Analg2007; 105(2): 358–364.
14.
ThomasNO'KaneC. The ethics of participatory research with children. Children & Society1998; 12(5): 336–348.
15.
SanciLASawyerSMWellerPJBondLMPattonGC. Youth health research ethics: Time for a mature-minor clause?Med J Austral2004; 180: 336–338.
16.
GroverS. On the limits of parental proxy consent: Children's right to non-participation in non-therapeutic research. J Acad Ethics2003; 1(4): 349–383.
17.
DHHS, Code of federal regulations, title 45 - public welfare: Department of Health and Human Services, part 46: Protection of human subjects. 2005, United States Department of Health and Human Services (DHHS): Washington.
18.
NHMRC, National statement on ethical conduct in research involving humans. 2007, National Health and Medical Research Council Canberra, Australia.
19.
O'DonnellLNDuranRHDovalA SanBreslinMJJuhnGMStueveA. Obtaining written parent permission for school-based health surveys of urban young adolescents. J Adoles Hlth1997; 21(6): 376–383.
20.
MoolchanETMermelsteinR. Research on tobacco use among teenagers: Ethical challenges. J Adoles Hlth2002; 30(6): 409–417.
21.
SantelliJRogersA Smith. Parental permission, passive consent, and ‘children’ in research. J Adoles Hlth2002; 31(4): 303–304.
22.
WagenerDKSporerAKSimmerlingMFlomeJLAnCCurrySJ. Human participants challenges in youth-focused research: Perspectives and practices of IRB administrators. Ethics & Behavior2004; 14(4): 335–349.
23.
HeathSCharlesVCrowGWilesR. Informed consent, gatekeepers and go-betweens: Negotiating consent in child- and youth-orientated institutions. Br Educ Res J2007; 33(3): 403–417.
24.
HomanR. The principle of assumed consent: The ethics of gate-keeping. J Philos Educ2001; 35(3): 329.
25.
DavidMEdwardsRAlldredP. Children and school-based research: ‘informed consent’ or ‘educated consent'?Br Educ Res J2001; 27(3): 347–365.
26.
DenscombeMAubrookL. ‘It's just another piece of schoolwork’: The ethics of questionnaire research on pupils in schools. Br Educ Res J1992; 18(2): 113.
27.
CohnJMFeinJA. Adolescent decisional autonomy regarding participation in an emergency department youth violence interview. M J Bioethics2005; 5(5): 70–74.
28.
SantelliJGellerGChenDTSpeersMABotkinJRLaswellS. Recruitment of pregnant, minor adolescents and minor adolescents at risk of pregnancy into longitudinal, observational research: The case of the national children's study. In KodishE (ed). Ethics and research with children: A case-based approach. New York: Oxford University Press, 2005: 100–119.
29.
ScarrS. Ethical problems in research on risky behaviors and risky populations. Ethics & Behavior1994; 4(2): 147–155.
LyrenAKodishELazebnikR. Understanding confidentiality in the adolescent patient/doctor relationship: a pilot study (phase 1). J Adoles Hlth2004; 34(2): 114–115.
32.
LyrenAKodishELazebnikRO'RiordanMA. Understanding confidentiality: Perspectives of african american adolescents and their parents. J Adoles Hlth2006; 39(2): 261–265.
33.
PasternakRHChengTLGellerGParrishC. Parent and adolescent views of risk behavior research and consent. J Adoles Hlth2005; 36(2): 104–105.
34.
FisherCBWallaceSA. Through the community looking glass: re-evaluating the ethical and policy implications of research on adolescent risk and psychopathology. Ethics & Behavior2000; 10(2): 99–118.
35.
FisherCB. Adolescent and parent perspectives on ethical issues in youth drug use and suicide survey research. Ethics & Behavior2003; 13(4): 303–332.
36.
FlickerSGutaA. Ethical approaches to adolescent participation in sexual health research. J Adoles Hth2008; 42(1): 3–10.
37.
ThompsonRA. Behavioral research involving children: a developmental perspective on risk. IRB: Ethics and Human Research1990; 12(2): 1–6.
38.
ThompsonRA. Vulnerability in research: a developmental perspective on research risk. Child Development1990; 61(1): 1.
39.
GoodenoughTWilliamsonEKentJAshcroftR. ‘What did you think about that?’ researching children's perceptions of participation in a longitudinal genetic epidemiological study. Children & Society2003; 17(2): 113–125.
40.
MayeuxLUnderwoodMKRisserSD. Perspectives on the ethics of socio-metric research with children: How children, peers, and teachers help to inform the debate Merrill-Palmer Quarterly2007; 53(1): 53–78.
EdwardsRAlldredPAM. Children and young people's views of social research: the case of research on home-school relations. Childhood1999; 6(2): 261–281.
43.
McGeeEM. Altruism, children, and non-beneficial research. Am J Bioethics2003; 3(4): 21–23.
44.
WolthersOD. A questionnaire on factors influencing children's assent and dissent to non-therapeutic research. J Med Ethics2006; 32(5): 292–297.
45.
BorzekowskiDLGRickertVIIppL. At what price? The current state of subject payment in adolescent research. J Adolesc Hlth2003; 33(5): 378–384.
46.
WeiseKLSmithMLMaschkeKJCopelandH Liesel. National practices regarding payment to research subjects for participating in pediatric research. Pediatrics2002; 110(3): 577–582.
47.
BagleySJReynoldsWWNelsonRM. Is a ‘wage-payment’ model for research participation appropriate for children?Pediatrics2007; 119(1): 46–51.
48.
SchererDGBrodyJLAnnettRDHetterJRobertsL WeissCofrinKMW. Financial compensation to adolescents for participation in biomedical research: adolescent and parent perspectives in seven studies. J Pediatr2005; 146(4): 552–558.
