Discriminating Between Research and Care in Paediatric Oncology—Ethical Appraisal of the ALL-10 and 11 Protocols of the Dutch Childhood Oncology Group (DCOG)

Sara AS Dekking; Rieke van der Graaf; Martine C. de Vries; MB Bierings; J.J. van Delden

doi:10.1007/978-3-319-28731-7_5

Discriminating Between Research and Care in Paediatric Oncology—Ethical Appraisal of the ALL-10 and 11 Protocols of the Dutch Childhood Oncology Group (DCOG)

Sara AS Dekking, Rieke van der Graaf, Martine C. de Vries, MB Bierings, J.J. van Delden

Research output: Chapter in Book/Report/Conference proceeding › Chapter › Academic › peer-review

1 Citation (Scopus)

Abstract

Paediatric oncology is a classic example of a field in which research and care are closely intertwined. Moreover, bioethicists have argued that in environments such as paediatric oncology we should no longer draw sharp distinctions between research and care. Recently, two Dutch protocols for the treatment of children with Acute Lymphoblastic Leukaemia (ALL) have been categorised in two different ways, one as research (ALL-11) and the other as treatment (ALL-10). We analysed these protocols in order to explore whether the distinction between research and care in paediatric oncology is morally relevant. We applied several characteristics of research to the ALL-10 and 11 protocols: the goal of producing generalisable knowledge; systematic collection of data; potentially high and uncertain risks; burdens and risks unrelated to treatment; and provision of treatment according to detailed protocols. Both ALL-protocols exhibit general characteristics of research. At the same time, both protocols also clearly satisfy the objective of delivering the best available treatment. Therefore, it remains to be discussed how to review these kinds of protocols that integrate a research goal with the objective of providing individual patients with best current treatment. A change in both research ethics regulation and oversight of conventional care is needed. More case studies are essential to expand the moral evaluation of the intertwinement between research and care in paediatric oncology.

Original language	English
Title of host publication	Ethics and Governance of Biomedical Research
Subtitle of host publication	Theory and Practice
Editors	Daniel Strech, Marcel Mertz
Publisher	Springer
Pages	59-72
Number of pages	14
Volume	II
ISBN (Electronic)	978-3-319-28731-7
ISBN (Print)	978-3-319-28729-4
DOIs	https://doi.org/10.1007/978-3-319-28731-7_5
Publication status	Published - 2016

Publication series

Name	Research Ethics Forum
Volume	4
ISSN (Print)	2212-9529
ISSN (Electronic)	2212-9537

Keywords

Acute Lymphoblastic Leukaemia
Conditioning Regimen
Down Syndrome
Paediatric Oncology
Total Body Irradiation

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10.1007/978-3-319-28731-7_5

Cite this

Dekking, S. AS., van der Graaf, R., de Vries, M. C., Bierings, MB., & van Delden, J. J. (2016). Discriminating Between Research and Care in Paediatric Oncology—Ethical Appraisal of the ALL-10 and 11 Protocols of the Dutch Childhood Oncology Group (DCOG). In D. Strech, & M. Mertz (Eds.), Ethics and Governance of Biomedical Research: Theory and Practice (Vol. II, pp. 59-72). (Research Ethics Forum; Vol. 4). Springer. https://doi.org/10.1007/978-3-319-28731-7_5

Dekking, Sara AS ; van der Graaf, Rieke ; de Vries, Martine C. et al. / Discriminating Between Research and Care in Paediatric Oncology—Ethical Appraisal of the ALL-10 and 11 Protocols of the Dutch Childhood Oncology Group (DCOG). Ethics and Governance of Biomedical Research: Theory and Practice. editor / Daniel Strech ; Marcel Mertz . Vol. II Springer, 2016. pp. 59-72 (Research Ethics Forum).

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abstract = "Paediatric oncology is a classic example of a field in which research and care are closely intertwined. Moreover, bioethicists have argued that in environments such as paediatric oncology we should no longer draw sharp distinctions between research and care. Recently, two Dutch protocols for the treatment of children with Acute Lymphoblastic Leukaemia (ALL) have been categorised in two different ways, one as research (ALL-11) and the other as treatment (ALL-10). We analysed these protocols in order to explore whether the distinction between research and care in paediatric oncology is morally relevant. We applied several characteristics of research to the ALL-10 and 11 protocols: the goal of producing generalisable knowledge; systematic collection of data; potentially high and uncertain risks; burdens and risks unrelated to treatment; and provision of treatment according to detailed protocols. Both ALL-protocols exhibit general characteristics of research. At the same time, both protocols also clearly satisfy the objective of delivering the best available treatment. Therefore, it remains to be discussed how to review these kinds of protocols that integrate a research goal with the objective of providing individual patients with best current treatment. A change in both research ethics regulation and oversight of conventional care is needed. More case studies are essential to expand the moral evaluation of the intertwinement between research and care in paediatric oncology.",

keywords = "Acute Lymphoblastic Leukaemia, Conditioning Regimen, Down Syndrome, Paediatric Oncology, Total Body Irradiation",

author = "Dekking, {Sara AS} and {van der Graaf}, Rieke and {de Vries}, {Martine C.} and MB Bierings and {van Delden}, J.J.",

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Dekking, SAS, van der Graaf, R, de Vries, MC, Bierings, MB & van Delden, JJ 2016, Discriminating Between Research and Care in Paediatric Oncology—Ethical Appraisal of the ALL-10 and 11 Protocols of the Dutch Childhood Oncology Group (DCOG). in D Strech & M Mertz (eds), Ethics and Governance of Biomedical Research: Theory and Practice. vol. II, Research Ethics Forum, vol. 4, Springer, pp. 59-72. https://doi.org/10.1007/978-3-319-28731-7_5

Discriminating Between Research and Care in Paediatric Oncology—Ethical Appraisal of the ALL-10 and 11 Protocols of the Dutch Childhood Oncology Group (DCOG). / Dekking, Sara AS; van der Graaf, Rieke; de Vries, Martine C. et al.
Ethics and Governance of Biomedical Research: Theory and Practice. ed. / Daniel Strech; Marcel Mertz . Vol. II Springer, 2016. p. 59-72 (Research Ethics Forum; Vol. 4).

Research output: Chapter in Book/Report/Conference proceeding › Chapter › Academic › peer-review

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T1 - Discriminating Between Research and Care in Paediatric Oncology—Ethical Appraisal of the ALL-10 and 11 Protocols of the Dutch Childhood Oncology Group (DCOG)

AU - Dekking, Sara AS

AU - van der Graaf, Rieke

AU - de Vries, Martine C.

AU - Bierings, MB

AU - van Delden, J.J.

PY - 2016

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AB - Paediatric oncology is a classic example of a field in which research and care are closely intertwined. Moreover, bioethicists have argued that in environments such as paediatric oncology we should no longer draw sharp distinctions between research and care. Recently, two Dutch protocols for the treatment of children with Acute Lymphoblastic Leukaemia (ALL) have been categorised in two different ways, one as research (ALL-11) and the other as treatment (ALL-10). We analysed these protocols in order to explore whether the distinction between research and care in paediatric oncology is morally relevant. We applied several characteristics of research to the ALL-10 and 11 protocols: the goal of producing generalisable knowledge; systematic collection of data; potentially high and uncertain risks; burdens and risks unrelated to treatment; and provision of treatment according to detailed protocols. Both ALL-protocols exhibit general characteristics of research. At the same time, both protocols also clearly satisfy the objective of delivering the best available treatment. Therefore, it remains to be discussed how to review these kinds of protocols that integrate a research goal with the objective of providing individual patients with best current treatment. A change in both research ethics regulation and oversight of conventional care is needed. More case studies are essential to expand the moral evaluation of the intertwinement between research and care in paediatric oncology.

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KW - Total Body Irradiation

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Dekking SAS, van der Graaf R, de Vries MC, Bierings MB , van Delden JJ. Discriminating Between Research and Care in Paediatric Oncology—Ethical Appraisal of the ALL-10 and 11 Protocols of the Dutch Childhood Oncology Group (DCOG). In Strech D, Mertz M, editors, Ethics and Governance of Biomedical Research: Theory and Practice. Vol. II. Springer. 2016. p. 59-72. (Research Ethics Forum). doi: 10.1007/978-3-319-28731-7_5

Discriminating Between Research and Care in Paediatric Oncology—Ethical Appraisal of the ALL-10 and 11 Protocols of the Dutch Childhood Oncology Group (DCOG)

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