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

Sarah Scollon, Katie Bergstrom, Laurence B. Mccullough, Amy L. Mcguire, Stephanie Gutierrez, Robin Kerstein, D. Williams Parsons, Sharon E. Plon

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish (US)
Pages (from-to)529-537
Number of pages9
JournalJournal of Law, Medicine and Ethics
Volume43
Issue number3
DOIs
StatePublished - Sep 1 2015

ASJC Scopus subject areas

  • Issues, ethics and legal aspects
  • Health Policy

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