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Legal and Ethical Issues in Child-and Family-Centred Care: Transplantation

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Paediatric Patient and Family-Centred Care: Ethical and Legal Issues

Part of the book series: International Library of Ethics, Law, and the New Medicine ((LIME,volume 57))

Abstract

Two concepts are currently fundamental to paediatric bioethics (1) the framework of family-centred care and (2) the patient centred commitment to the best interests and rights of children. While these two concepts often work synergistically, family and patient interests sometimes differ, challenging healthcare professionals with ethical tensions. Adding to this tension is the fact that healthcare consent laws are highly patient-centred. The conflict between family and patient-centred models is often present in clinical ethics consultation. We will critically examine these ethical issues in the domain of paediatric organ transplantation, including youth as living donors, living related donation, and disclosure of misattributed paternity. Issues pertaining to solid deceased organ transplantation include navigating the disagreement between child and family regarding proceeding with transplantation. Lastly, we will discuss the ethical issues pertaining to using siblings as hematopoietic stem cell donors and the ethics of children conceived to save a sibling. This area of medicine provides rich examples of tensions between patient and family centred care and of circumstances where they may work synergistically. The challenge for healthcare workers is to address these issues and determine when it is medically and ethically appropriate to offer transplantation to children.

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Notes

  1. 1.

    PGD is an assisted reproductive technology that permits genetic screening of an embryo before it is implanted, with an obvious advantage given that a woman need not wait until birth to know whether her child suffers from a genetic disorder.

Abbreviations

AAP:

American Academy of Pediatrics

AHRA:

Assisted Human Reproduction Act

CAS:

Children’s Aid Society

CCSS:

Children conceived to save a sibling

COI:

Conflict of interest

DBA:

Diamond-Blackfan Anaemia

DD:

Deceased donor

ESRD:

End Stage Renal Disease

HFEA:

Human Fertilisation and Embryology Act

HFEAu:

Human Fertilisation and Embryology Authority

HLA:

Human leukocyte antigen

HSC:

Hematopoietic stem cell

HSCD:

Hematopoietic stem cell donor

HSCT:

Hematopoietic stem cell transplantation

IVF:

In vitro fertilization

LD:

Living organ donor

PGD:

Pre-implantation genetic diagnosis

UNOS:

United Network for Organ Sharing

YLD:

Young living organ donor

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Authors and Affiliations

  1. Bioethics Department, The Hospital for Sick Children, 555 University Avenue, M5G 1X8, Toronto, Ontario, Canada

    Rebecca Greenberg RN, PhD

  2. The Joint Centre for Bioethics, University of Toronto, 555 University Avenue, M5G 1X8, Toronto, Ontario, Canada

    Rebecca Greenberg RN, PhD, Michael Campbell MHSc & Linda Wright MSW, RSW, MHSc

  3. Department of Family and Community Medicine, Faculty of Medicine, University of Toronto, 555 University Avenue, M5G 1X8, Toronto, Ontario, Canada

    Rebecca Greenberg RN, PhD

  4. Bioethics Programme, University Health Network, 555 University Avenue, M5G 1X8, Toronto, Ontario, Canada

    Michael Campbell MHSc & Linda Wright MSW, RSW, MHSc

Authors
  1. Rebecca Greenberg RN, PhD
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  2. Michael Campbell MHSc
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  3. Linda Wright MSW, RSW, MHSc
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Correspondence to Rebecca Greenberg RN, PhD .

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Editors and Affiliations

  1. Dept. of Bioethics, The Hospital for Sick Children, Toronto, Canada

    Randi Zlotnik Shaul

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Greenberg, R., Campbell, M., Wright, L. (2014). Legal and Ethical Issues in Child-and Family-Centred Care: Transplantation. 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_15

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  • DOI: https://doi.org/10.1007/978-1-4939-0323-8_15

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