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

Title	Pediatric Cancer Genetics Research and an Evolving Preventive Ethics Approach for Return of Results after Death of the Subject.
Publication Type	Journal Article
Year of Publication	2015
Authors	Scollon, S, Bergstrom, K, McCullough, LB, McGuire, AL, Gutierrez, S, Kerstein, R, D Parsons, W, Plon, SE
Journal	J Law Med Ethics
Volume	43
Issue	3
Pagination	529-37
Date Published	2015 Fall
ISSN	1748-720X
Keywords	Adult, Child, Child, Preschool, Death, Disclosure, Genetic Research, Genomics, Humans, Neoplasms, Research Subjects
Abstract	The return of genetic research results after death in the pediatric setting comes with unique complexities. Researchers must determine which results and through which processes results are returned. This paper discusses the experience over 15 years in pediatric cancer genetics research of returning research results after the death of a child and proposes a preventive ethics approach to protocol development in order to improve the quality of return of results in pediatric genomic settings.
DOI	10.1111/jlme.12295
Alternate Journal	J Law Med Ethics
PubMed ID	26479562
PubMed Central ID	PMC4617204
Grant List	R21HG006594-01 / HG / NHGRI NIH HHS / United States U01 HG006485 / HG / NHGRI NIH HHS / United States R01 CA154517 / CA / NCI NIH HHS / United States 1U01HG006485 / HG / NHGRI NIH HHS / United States 1-R01-CA154517 / CA / NCI NIH HHS / United States R21 HG006594 / HG / NHGRI NIH HHS / United States