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

J Law Med Ethics. Fall 2015;43(3):529-37. doi: 10.1111/jlme.12295.

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.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adult
  • Child
  • Child, Preschool
  • Death*
  • Disclosure / ethics*
  • Genetic Research / ethics*
  • Genomics / ethics*
  • Humans
  • Neoplasms / genetics*
  • Research Subjects*