Abstract
Two major trends have developed in paediatric bioethics: family-centred care and increased recognition of emerging autonomy through legal and policy entrenched rights. The different foci of their corresponding healthcare delivery models (“family-centred” or “patient-/child-centred”) create the potential for conflict in the context of seeking consent to research or, as will be presented, the possibility of integration. Given the state of current bioethical principles and legal holdings, the paediatric patient should ultimately be the primary focus of ethical consideration and, at least in the context of dissenting to research, the child’s autonomous wishes should reign. However, in recognizing and supporting a child’s emerging autonomy, the family context should be respected and taken into account. This discussion articulates the values underpinning these two important trends in paediatric healthcare delivery, and proposes a model for obtaining consent for paediatric research in the current context.
The content of this chapter was previously published April 24, 2012: Sheahan L, Da Silva M, Czoli C, Zlotnik Shaul R (2012) A Canadian Perspective on a Child’s Consent to Research within a Context of Family-Centered Care: From Incompatibility to Synergy.
J Clinic Res Bioeth 3:132. doi:10.4172/2155-9627.1000132.
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Sheahan, L., Da Silva, M., Czoli, C., Zlotnik Shaul, R. (2014). A Canadian Perspective on a Child’s Consent to Research Within a Context of Family-Centred Care: From Incompatibility to Synergy. In: Zlotnik Shaul, R. (eds) Paediatric Patient and Family-Centred Care: Ethical and Legal Issues. International Library of Ethics, Law, and the New Medicine, vol 57. Springer, New York, NY. https://doi.org/10.1007/978-1-4939-0323-8_2
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