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Frontline Ethico-Legal Issues in Childhood Cancer Genetics Research

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The Hereditary Basis of Childhood Cancer

Abstract

Clinical research involving child participants frequently raises both legal and ethical concerns that researchers, clinicians, and parents must navigate to pursue relevant pediatric-centered investigation in health and particularly in cancer care. The foundational ethico-legal principles governing research participation provide the necessary frameworks with which to evaluate how emerging genetic technologies can serve current and future childhood cancer research. Taking the best interests of the child as the primary consideration in all decisions affecting a child, this chapter explores issues regarding consent/assent and return of results in pediatric oncology research. With a primary focus on Canada, the USA, and Europe, we examine the issues presented by the use of next-generation sequencing, pharmacogenomics, and biobanking and data sharing in international consortia.

The 1989 United Nations Convention on the Rights of the Child states that the “best interests of the child shall be a primary consideration” in all actions concerning children and recognizes the “right of the child to the enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health” [1].

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Notes

  1. 1.

    Analytic and conceptual validity are related but distinct concepts. The former indicates how well a test detects the presence (or absence) of a gene, while the latter is whether the test has any clinical significance for disease diagnosis, treatment, or management. For more, see Chapter 4 in National Academies of Sciences, Engineering, and Medicine, Health and Medicine Division, Board on Health Care Services, Board on the Health of Select Populations, Committee on the Evidence Base for Genetic Testing. An Evidence Framework for Genetic Testing. Washington (DC): National Academies Press (US); 2017. Available from: http://www.ncbi.nlm.nih.gov/books/NBK425808/.

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Acknowledgments

The authors wish to thank the Canadian Institutes of Health Research and the Terry Fox Foundation (TFF-105266), the Canadian Institutes of Health Research and Genome Canada (Care4Rare-SOLVE (C4R-SOLVE)), Genome Canada through IGNITE (Orphan Diseases: Identifying Genes and Novel Therapeutics to Enhance Treatment), the Canadian Pediatric Cancer Genome Consortium (CPCGC), Genome Atlantic, and the Terry Fox PRecision Oncology For Young peopLE (PROFYLE) program for the financial support. VR also thanks Vanier Canada Graduate Scholarships (CIHR #359258).

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Authors and Affiliations

  1. Centre of Genomics and Policy, McGill University, Montreal, QC, Canada

    Michael J. S. Beauvais & Bartha Maria Knoppers

  2. Independent Researcher, Montreal, QC, Canada

    Karine Sénécal

  3. IWK Health Centre, Halifax, NS, Canada

    Conrad V. Fernandez

  4. CHU Sainte-Justine, Research Centre, Montreal, QC, Canada

    Daniel Sinnett

  5. Stanford Center for Biomedical Ethics, Stanford University, CA, USA

    Vasiliki Rahimzadeh

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  1. Michael J. S. Beauvais
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  2. Karine Sénécal
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  3. Conrad V. Fernandez
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  4. Daniel Sinnett
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  5. Vasiliki Rahimzadeh
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  6. Bartha Maria Knoppers
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Correspondence to Bartha Maria Knoppers .

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  1. University of Toronto, Departments of Pediatrics and Medical Biophysics, The Hospital for Sick Children, Division of Hematology/Oncology, Toronto, ON, Canada

    David Malkin

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Beauvais, M.J.S., Sénécal, K., Fernandez, C.V., Sinnett, D., Rahimzadeh, V., Knoppers, B.M. (2021). Frontline Ethico-Legal Issues in Childhood Cancer Genetics Research. In: Malkin, D. (eds) The Hereditary Basis of Childhood Cancer. Springer, Cham. https://doi.org/10.1007/978-3-030-74448-9_13

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