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