Children as means and ends in large-scale medical research

Bioethics

Volumn 26, Issue 8, 2012, Pages 422-430

  Williams, Garrath ^a  

^a LANCASTER UNIVERSITY   (United Kingdom)

Author keywords

Children; Consent; Epidemiology; Genetics; Kantian ethics; Participation; Research

Indexed keywords

ARTICLE; CHILD; CHILD DEVELOPMENT; CHILD WELFARE; COOPERATION; EPIDEMIOLOGY; ETHICS; GENETICS; HUMAN; INFORMED CONSENT; PATIENT SELECTION; RESEARCH SUBJECT;

CHILD; CHILD DEVELOPMENT; CHILD WELFARE; COOPERATIVE BEHAVIOR; EPIDEMIOLOGY; ETHICAL ANALYSIS; GENETIC RESEARCH; HUMANS; INFORMED CONSENT; PATIENT SELECTION; RESEARCH SUBJECTS;

EID: 84866274183     PISSN: 02699702     EISSN: 14678519     Source Type: Journal    
DOI: 10.1111/j.1467-8519.2010.01873.x     Document Type: Article

References (49)

1. For examples, see: R.B. Redmon. How Children Can Be Respected as 'Ends' yet Still Be Used as Subjects in Non-Therapeutic Research. J Med Ethics 1986; 12: 77-82
2. S.D. Edwards & M.J. McNamee. Ethical Concerns Regarding Guidelines for the Conduct of Clinical Research on Children.3 J Med Ethics 2005; 31: 351-354.
3. I have argued elsewhere that we should also be more rigorous in scrutinizing hoped-for benefits: Bioethics and Large-scale Biobanking: Individualistic Ethics and Collective Projects. Genomics Soc Policy 2005; 1: 50-66http://www.gspjournal.com
4. Compare I. Evans, H. Thornton & I. Chalmers. 2006. 'Ethicists often seem more concerned with protecting "the vulnerable" than with encouraging the proper contribution of patients through equal partnerships.'Testing Treatments: Better Research For Better Healthcare, London: British Library: 59.
5. On the point that this is first of all a matter of authority rather than competence per se, see T. Schapiro: What is a Child? Ethics 1999; 109: 715-738
6. Childhood and Personhood. Ariz Law Review 2003; 45: 575-594
7. Such authority corresponds to the status of a responsible person: someone whose words and deeds and resources count as her own, and who bears a special responsibility for her own life (as Arthur Ripstein puts it: Justice and Responsibility. Can J Law Jurisprud 2004; XVII: 361-386
8. I refer to the well-known problem of children being 'therapeutic orphans'- that is, a group for whom otherwise familiar and often essential treatments remain untested. This problem has been the target of many regulatory reforms in recent decades: see L.F. Ross. Children in Medical Research: Access versus Protection. Oxford: Oxford University Press.2006
9. Metaphysics of Morals 6:452, see also 6:390, 6:445f. (These are the standard volume and page references found in the margins of all modern translations. I quote M. Gregor, ed./trans. 1996. Cambridge: Cambridge University Press.) On the scope, definition and importance of imperfect duties as against rights claims, see: O. O'Neill. Children's Rights and Children's Lives. Ethics 1988; 98: 445-463
10. O. O'Neill. 2002. Instituting Principles: Between Principles and Action. In Kant's Metaphysics of Morals. M. Timmons, ed. Oxford: Oxford University Press: 331-347
11. B. Herman. 2007. Obligatory Ends. In her Moral Literacy. Cambridge MA: Harvard University Press: 254-275
12. This point was clearly noted when research on children became the topic of a famous hammer-and-tongs debate between Paul Ramsey and Richard McCormick. Ramsey insisted: 'To attempt to consent for a child to be made an experimental subject is to treat a child as not a child. It is to treat him as if he were an adult person who has consented to become a joint adventurer in the common cause of medical research.' The Enforcement of Morals: Nontherapeutic Research on Children. Hastings Cent Rep 1976; 6: 21-30
13. I wish to allow the truth in this claim, as well as that in McCormick's reply: 'in using the language of ought we concentrate on sociality, not age. And in doing so, I submit that we introduce the infant not to the world of adults, but to the world of social human beings.' Experimentation in Children: Sharing in Sociality. Hastings Cent Rep 1976; 6: 41-46
14. At the same time, I mean to take more seriously the Kantian concepts that only figured, so to speak, as a mere means in that debate, and the limits of consent that are revealed when we do so.
15. Note that there is a very pragmatic side to the importance of consent: human cooperation generally relies on individuals' intelligence, initiative and commitment to the shared endeavour. Not only is it often immoral to extort cooperation from an unconsenting party, it is also typically costly and even ineffective: you cannot make someone be your friend, for example. Likewise, much medical research depends on people's active cooperation.
16. Another way to undermine multilateral terms of cooperation is free-riding. This is a specific sort of cherry-picking: one picks the benefits but not the costs. Since the cases of cooperation that I consider here do not involve tangible benefits for research subjects, I will not dwell on this possibility.
17. Another way of putting the issues at stake here is that we should not confuse consenting and making commitments (or in general, willing) with wanting or wishing. I may consent to something that I do not want, out of a sense of duty perhaps. Conversely, I may want all sorts of incompatible things, whereas my willing must be consistent if it is to count as willing at all. This distinction corresponds to the fact that propositional attitudes such as willing, consenting, believing, and attesting represent normative commitments. Requirements that a person be consistent in those attitudes and that the attitudes be rationally defensible reflect the fact that these are intersubjective phenomena, that relate to a person's authority as a knower and chooser. This may sound rather abstract, but we teach children these lessons very early. To say, 'Well you said you wanted to go' is to make the point: you willed it (by your declaration) and are therefore committed to it, in the sense of having no (or fewer) rights to complain now that others have helped realize your will. This is a basic lesson in responsibility.
18. See P. Alderson. In the Genes or in the Stars? Children's Competence to Consent. J Med Ethics 1992; 18: 119-124
19. P. Alderson. 1993. Children's Consent to Surgery. Buckingham: Open University Press; P. Alderson. Competent Children? Minors' Consent to Health Care Treatment and Research. Soc Sci Med 2007; 65: 2272-2283.
20. I take it that this difficulty is, alongside the fact that a clear power relation is involved, one reason for the standard research ethics proviso that participants may withdraw at any time, without giving a reason.
21. Depending on the parents' own confidence in interacting with institutions and asserting (what they see as) their rights within and against them. See Annette Lareau's marvellous study: Unequal Childhoods: Class, Race, and Family Life. Berkeley, CA: University of California Press.2003
22. That is, participation is not in the child's interests, at least not in any tangible sense. (A limited exception may occur if families receive feedback or referral in case of abnormal clinical measurements.) This is important because we do all sorts of things to a child, or make a child do all sorts of things, in the name of our duties to protect and promote his or her interests. No such duty applies here.
23. In some cases, it is not clear whether routine uses of data or samples are reasonable. Compare the CDC's monitoring of HIV prevalence in all pregnant women (where no results are returned to the mothers) or routine testing for HIV and other diseases of pregnant women in the UK (where results, if positive, are given to the mother). With regard to US practice and debates, see A.L. Fairchild. Dealing with Humpty Dumpty: Research, Practice, and the Ethics of Public Health Surveillance. J Law Med Ethics 2003; 31: 615-623
24. O. O'Neill. Informed Consent and Public Health. Phil Trans R Soc Lond B 2004; 359: 1133-1136.
25. As Michel Foucault observes, this systematic examination of many individuals enabled the 'epistemological thaw' in modern medicine. Discipline and Punish. A. Sheridan, trans. Harmondsworth: Penguin: 1851991
26. More exactly: the extent to which individuals can opt out of various aspects belongs to the broader terms that govern all parties' interaction.
27. Again, what counts as 'reasonable' will vary. In sexual health clinics, for example, a person may be treated under a pseudonym.
28. In the second respect, then, the child is asked to be a donor, while in the third she is asked to be a participant. Compare L. Glantz, P. Roche & G. J. Annas. Rules for Donations to Tissue Banks - What Next?' N Engl J Med 2008; 358: 298-303.
29. Speaking in terms of 'risk-benefit' is liable to obscure this, by eliding the speculative quality of the hoped-for benefits, and focussing on risks rather than costs. Compare P. Alderson & V. Morrow. Ethics, Social Research and Consulting with Children and Young People. Barkingside: Barnardo's .200439
30. I leave open the question as to whether children have duties (which some may think Kant is bound to deny). Either way, it is clear that they must learn how to fulfil them.
31. In this and the following section I draw especially on qualitative work regarding [Accessed 21 Jul ]), since there is otherwise little work on children's experience of large-scale medical research. Let me emphasize that in doing so I do not mean any criticism of ALSPAC. To the contrary, my argument starts from the premise that such a study is a particularly valuable form of social cooperation. children's experience of ALSPAC (the Avon Longitudinal Study of Parents and Children, http://www.bristol.ac.uk/alspac2010
32. T. Goodenough, E. Williamson, J. Kent & R. Ashcroft. 2004. Ethical Protection in Research: Including Children in the Debate. In Researchers and their 'Subjects': Ethics, Power, Knowledge, and Consent. M. Smyth & E. Williamson, eds. Bristol: Policy Press: 55-72
33. E. Williamson, T. Goodenough, J. Kent & R. Ashcroft. 2004. Children's Participation in Genetic Epidemiology: Consent and Control. In R. Tutton & O. Corrigan, eds. Genetic Databases: Socio-Ethical Issues in the Collection and Use of DNA. London: Routledge: 139-160
34. Compare Priscilla Alderson's words, albeit in the context of prenatal decisions and severely disabled children: 'Informed and voluntary consent is left to parents, whose interests and values may conflict with the child's. children may then be used as means to other people's ends without their willing consent.'Utopia or Dystopia? The New Genetics as an Environment for Childhood. In Children and Young People's Environments. M. Gollop & J. McCormack, eds. Dunedin: Children's Issues Centre: 1-18: 9.2002
35. Obviously specific forms of genetic testing might pose problems, and would hardly be permitted by research ethics committees for just this reason.
36. Whereas it is striking how far we will go, at least in face-to-face interaction in most Western cultures, to avoid implying that an adult is guilty of moral error.
37. And a poor philosophical lesson: to repeat, the basic point is that consenting (or more generally, willing) is not the same as liking or wanting.
38. T. John, T. Hope, J. Savulescu, A. Stein & A.J. Pollard. Children's Consent and Paediatric Research: Is it Appropriate for Healthy Children to Be the Decision-Makers in Clinical Research? Arch Dis Child. 2008; 93: 379-383
39. Although one can see how the authors' worry arises, I should add that their charge concerning current guidelines is certainly arguable. See, for example: Royal College of Paediatrics and Child Health: Ethics Advisory Committee. Guidelines for the Ethical Conduct of Medical Research Involving Children. Arch Dis Child 2000; 82: 177-82
40. Ethics Working Group of the Confederation of European Specialists in Paediatrics. Guidelines for Informed Consent in Biomedical Research Involving Paediatric Populations as Research Participants. Eur J Pediatr 2003; 162: 455-458
41. F. Furedi. 2002. Paranoid Parenting. Chicago IL: Chicago Review Press: ch. 8.
42. Perhaps this is the place to say that one of my especial concerns is with large-scale studies on childhood obesity, and to record my thanks to other participants in the IDEFICS study (Identification and prevention of Dietary-and lifestyle-induced health EFfects In Children and infants, Project no. 016181), funded by the European Commission within the Sixth Framework Programme (2002-2006): http://www.idefics.eu 2010
43. At least one very good overview article fails to consider concerns about confidentiality and intrusiveness: V. Morrow & M. Richards. The Ethics of Social Research with Children: An Overview. Children and Society 1996; 10: 90-105
44. On children's views about what may be felt as personal or intrusive, see further R. Edwards & P. Alldred. Children and Young People's Views of Social Research: The Case of Research on Home-School Relations. Childhood 1999; 6: 261-281
45. For a devastating account of children's experiences of adults failing to keep confidences see I. Butler & H. Williamson. Children Speak: Children, Trauma and Social Work. London: Longman/NSPCC.1994
46. I thank Martin Richards and Theresa Marteau for pressing me on this point.
47. In saying this I only mean to raise a potential source of concern, not to suggest a criterion for assessing what is reasonable within an on-going project.
48. Something similar represents our official attitude to sexual consent. But I think many of us have found it impossible to enact this attitude - that is, have let a sense of duty carry us through an encounter we would sooner have ended - and not necessarily regretted this.
49. This can be thought of as an important aspect of the opacity of consent that Onora O'Neill has stressed as bedevilling the informational side of 'informed consent,' beginning with her 1985. Between Consenting Adults. Reprinted in her Constructions of Reason. Cambridge: Cambridge University Press: 105-1251989