A Canadian Perspective on a Child’s Consent to Research within a Context of Family-Centered Care: From Incompatibility to Synergy

Abstract

Two major trends have developed in pediatric bioethics: family-centered care and increased recognition of emerging autonomy through legal and policy entrenched rights. The different foci of their corresponding health care delivery models ("family-centered" or "patient-/child-centered") 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 pediatric 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 also be respected and taken into account. This discussion articulates the values underpinning these two important trends in pediatric health care delivery, and proposes a model for obtaining consent for pediatric research in the current context.

Disclosing incidental findings in brain research: The rights of minors in decision‐making

“…Over the past 2 decades, a growing global trend in bioethics has come to recognize the developing autonomy and decisional capacity of children through legal and policy frameworks that emphasizes human rights . In many countries (e.g., England, Australia, Canada), a minor is able to provide consent for medical treatment without the need for parental permission or knowledge if he or she is judged to be competent (i.e., the Gillick Standard) .…”

“…The Gillick standard was originally developed to allow competent minors to make medical decisions concerning their sexual health. Within the context of research, guidelines also now explicitly recognize the emerging autonomy and developing decisional capacity of children through the requirement for assent or dissent to participate in research during the consent process . Some bioethicists have argued that the Gillick standard for consent in the medical arena can also be applied within the research context if the research is likely to bring direct benefits to the participants and poses minimal risks to them .…”

Too Vulnerable to Participate? Challenges for Meaningful Participation in Research With Children in Alternative Care and Adoption

“…Interestingly, in some countries, new developments in the last decade highlight the importance of including children in research in schools (Aguilar et al, in press;Núñez et al, 2016;Peña Ochoa & Bonhomme, 2018;Ramírez-Casas del Valle & Alfaro-Inzunza, 2018) and the relevant information they can provide regarding topics such as architecture and design (Adams et al, 2012). A change of vision from a family-centred perspective to a child rights view has enabled new developments in hospitals regarding child participation and informed consent (Sheahan et al, 2012). Likewise, research with children in contexts of political crisis and armed conflicts has provided new and relevant perspectives (Castillo-Gallardo et al, 2018;Ospina-Alvarado et al, 2018).…”

A Canadian Perspective on a Child’s Consent to Research Within a Context of Family-Centred Care: From Incompatibility to Synergy

“…This chapter explores the compatibility of these perspectives, and offers a guide as to how these views may be integrated in the context of consent to research (Sheahan et al 2012).…”