Literature DB >> 26479562

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

Sarah Scollon1, Katie Bergstrom2, Laurence B McCullough3, Amy L McGuire4, Stephanie Gutierrez5, Robin Kerstein6, D Williams Parsons7, Sharon E Plon8.   

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.
© 2015 American Society of Law, Medicine & Ethics, Inc.

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Year:  2015        PMID： 26479562      PMCID： PMC4617204          DOI： 10.1111/jlme.12295

Source DB:  PubMed          Journal:  J Law Med Ethics        ISSN： 1073-1105            Impact factor:   1.718


  24 in total

Review 1.  Return of individual research results and incidental findings: facing the challenges of translational science.

Authors:  Susan M Wolf
Journal:  Annu Rev Genomics Hum Genet       Date:  2013-07-15       Impact factor: 8.929

2.  Prevalence and functional consequence of TP53 mutations in pediatric adrenocortical carcinoma: a children's oncology group study.

Authors:  Jonathan D Wasserman; Ana Novokmet; Claudia Eichler-Jonsson; Raul C Ribeiro; Carlos Rodriguez-Galindo; Gerard P Zambetti; David Malkin
Journal:  J Clin Oncol       Date:  2015-01-12       Impact factor: 44.544

3.  Clinical manifestations in a cohort of 41 Rothmund-Thomson syndrome patients.

Authors:  L L Wang; M L Levy; R A Lewis; M M Chintagumpala; D Lev; M Rogers; S E Plon
Journal:  Am J Med Genet       Date:  2001-07-22

4.  Essential elements of genetic cancer risk assessment, counseling, and testing: updated recommendations of the National Society of Genetic Counselors.

Authors:  Bronson D Riley; Julie O Culver; Cécile Skrzynia; Leigha A Senter; June A Peters; Josephine W Costalas; Faith Callif-Daley; Sherry C Grumet; Katherine S Hunt; Rebecca S Nagy; Wendy C McKinnon; Nancie M Petrucelli; Robin L Bennett; Angela M Trepanier
Journal:  J Genet Couns       Date:  2011-12-02       Impact factor: 2.537

5.  Rothmund-thomson syndrome responsible gene, RECQL4: genomic structure and products.

Authors:  S Kitao; N M Lindor; M Shiratori; Y Furuichi; A Shimamoto
Journal:  Genomics       Date:  1999-11-01       Impact factor: 5.736

6.  Returning genetic research results: study type matters.

Authors:  Amy L McGuire; Jill Oliver Robinson; Rachel B Ramoni; Debra S Morley; Steven Jofe; Sharon E Plon
Journal:  Per Med       Date:  2013-01       Impact factor: 2.512

7.  Association between osteosarcoma and deleterious mutations in the RECQL4 gene in Rothmund-Thomson syndrome.

Authors:  Lisa L Wang; Anu Gannavarapu; Claudia A Kozinetz; Moise L Levy; Richard A Lewis; Murali M Chintagumpala; Ramon Ruiz-Maldanado; Jose Contreras-Ruiz; Christopher Cunniff; Robert P Erickson; Dorit Lev; Maureen Rogers; Elaine H Zackai; Sharon E Plon
Journal:  J Natl Cancer Inst       Date:  2003-05-07       Impact factor: 13.506

8.  Clinical guides to preventing ethical conflicts between pregnant women and their physicians.

Authors:  F A Chervenak; L B McCullough
Journal:  Am J Obstet Gynecol       Date:  1990-02       Impact factor: 8.661

9.  Obtaining informed consent for clinical tumor and germline exome sequencing of newly diagnosed childhood cancer patients.

Authors:  Sarah Scollon; Katie Bergstrom; Robin A Kerstein; Tao Wang; Susan G Hilsenbeck; Uma Ramamurthy; Richard A Gibbs; Christine M Eng; Murali M Chintagumpala; Stacey L Berg; Laurence B McCullough; Amy L McGuire; Sharon E Plon; D Williams Parsons
Journal:  Genome Med       Date:  2014-09-17       Impact factor: 11.117

10.  Technical report: Ethical and policy issues in genetic testing and screening of children.

Authors:  Lainie Friedman Ross; Laine Friedman Ross; Howard M Saal; Karen L David; Rebecca R Anderson
Journal:  Genet Med       Date:  2013-02-21       Impact factor: 8.822
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  3 in total

Review 1.  Using genomics to define pediatric blood cancers and inform practice.

Authors:  Rachel E Rau; Mignon L Loh
Journal:  Hematology Am Soc Hematol Educ Program       Date:  2018-11-30

2.  Pragmatic Tools for Sharing Genomic Research Results with the Relatives of Living and Deceased Research Participants.

Authors:  Susan M Wolf; Emily Scholtes; Barbara A Koenig; Gloria M Petersen; Susan A Berry; Laura M Beskow; Mary B Daly; Conrad V Fernandez; Robert C Green; Bonnie S LeRoy; Noralane M Lindor; P Pearl O'Rourke; Carmen Radecki Breitkopf; Mark A Rothstein; Brian Van Ness; Benjamin S Wilfond
Journal:  J Law Med Ethics       Date:  2018-03-27       Impact factor: 1.718

3.  Stakeholders' perspectives on the post-mortem use of genetic and health-related data for research: a systematic review.

Authors:  Marieke A R Bak; M Corrette Ploem; Hakan Ateşyürek; Marieke T Blom; Hanno L Tan; Dick L Willems
Journal:  Eur J Hum Genet       Date:  2019-09-16       Impact factor: 4.246
  3 in total

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