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Pediatric Cancer Genetics Research and an Evolving Preventive Ethics Approach for Return of Results after Death of the Subject

Published online by Cambridge University Press:  01 January 2021

Sarah Scollon ,
Katie Bergstrom ,
Laurence B. McCullough ,
Amy L. McGuire ,
Stephanie Gutierrez ,
Robin Kerstein ,
D. Williams Parsons  and
Sharon E. Plon
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Extract

In the pediatric clinical setting, the parent/guardian will almost always be the authorized representative and designated recipient of clinical and research results, making the issue of to whom results should be returned in the pediatric setting less complex than in adult settings. It is also clear that, in genomic research related to pediatric diseases such as cancer, results may be of considerable clinical, ethical, and personal significance for parents in a number of ways, including a genomic explanation of the origin of their child’s cancer, implications for the genetic testing and medical care of other siblings and of the parents themselves, and reproductive planning with regard to the recurrence risk for future children to have an increased risk of cancer. However, what remains unclear is which results should be disclosed, and under what circumstances, to parents of deceased children.

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 43 , Issue 3 , Autumn 2015 , pp. 529 - 537
Copyright
Copyright © American Society of Law, Medicine and Ethics 2015

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