Literature DB >> 26479556

Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank.

Carmen Radecki Breitkopf1, Gloria M Petersen2, Susan M Wolf3, Kari G Chaffee4, Marguerite E Robinson5, Deborah R Gordon6, Noralane M Lindor7, Barbara A Koenig8.   

Abstract

Data are lacking with regard to participants' perspectives on return of genetic research results to relatives, including after the participant's death. This paper reports descriptive results from 3,630 survey respondents: 464 participants in a pancreatic cancer biobank, 1,439 family registry participants, and 1,727 healthy individuals. Our findings indicate that most participants would feel obligated to share their results with blood relatives while alive and would want results to be shared with relatives after their death.
© 2015 American Society of Law, Medicine & Ethics, Inc.

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Year:  2015        PMID: 26479556      PMCID: PMC4617194          DOI: 10.1111/jlme.12289

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


  18 in total

1.  Familial communication of research results: a need to know?

Authors:  Lee Black; Kelly A McClellan
Journal:  J Law Med Ethics       Date:  2011       Impact factor: 1.718

2.  Patients' Choices for Return of Exome Sequencing Results to Relatives in the Event of Their Death.

Authors:  Laura M Amendola; Martha Horike-Pyne; Susan B Trinidad; Stephanie M Fullerton; Barbara J Evans; Wylie Burke; Gail P Jarvik
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

Review 3.  Update on familial pancreatic cancer.

Authors:  Ralph H Hruban; Marcia I Canto; Michael Goggins; Richard Schulick; Alison P Klein
Journal:  Adv Surg       Date:  2010

4.  The return of results of deceased research participants.

Authors:  Anne Marie Tassé
Journal:  J Law Med Ethics       Date:  2011       Impact factor: 1.718

5.  Communication of biobanks' research results: what do (potential) participants want?

Authors:  Tineke M Meulenkamp; Sjef K Gevers; Jasper A Bovenberg; Gerard H Koppelman; Astrid van Hylckama Vlieg; Ellen M A Smets
Journal:  Am J Med Genet A       Date:  2010-10       Impact factor: 2.802

6.  Pancreatic cancer genetic epidemiology consortium.

Authors:  Gloria M Petersen; Mariza de Andrade; Michael Goggins; Ralph H Hruban; Melissa Bondy; Jeannette F Korczak; Steven Gallinger; Henry T Lynch; Sapna Syngal; Kari G Rabe; Daniela Seminara; Alison P Klein
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2006-04       Impact factor: 4.254

7.  Nucleotide excision repair pathway polymorphisms and pancreatic cancer risk: evidence for role of MMS19L.

Authors:  Robert R McWilliams; William R Bamlet; Mariza de Andrade; David N Rider; Julie M Cunningham; Gloria M Petersen
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2009-03-24       Impact factor: 4.254

8.  BRCA1, BRCA2, PALB2, and CDKN2A mutations in familial pancreatic cancer: a PACGENE study.

Authors:  David B Zhen; Kari G Rabe; Steven Gallinger; Sapna Syngal; Ann G Schwartz; Michael G Goggins; Ralph H Hruban; Michele L Cote; Robert R McWilliams; Nicholas J Roberts; Lisa A Cannon-Albright; Donghui Li; Kelsey Moyes; Richard J Wenstrup; Anne-Renee Hartman; Daniela Seminara; Alison P Klein; Gloria M Petersen
Journal:  Genet Med       Date:  2014-11-20       Impact factor: 8.822

Review 9.  Social and behavioral research in genomic sequencing: approaches from the Clinical Sequencing Exploratory Research Consortium Outcomes and Measures Working Group.

Authors:  Stacy W Gray; Yolanda Martins; Lindsay Z Feuerman; Barbara A Bernhardt; Barbara B Biesecker; Kurt D Christensen; Steven Joffe; Christine Rini; David Veenstra; Amy L McGuire
Journal:  Genet Med       Date:  2014-03-13       Impact factor: 8.822

10.  Receptivity and preferences of pancreatic cancer family members for participating in lifestyle programs to reduce cancer risk.

Authors:  Lisa A Howell; Pamela S Sinicrope; Tabetha A Brockman; Christi A Patten; Paul A Decker; Shawna L Ehlers; Ashley Nadeau; Kari G Rabe; Carmen Radecki Breitkopf; Gloria M Petersen
Journal:  Hered Cancer Clin Pract       Date:  2013-05-31       Impact factor: 2.857

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  19 in total

1.  Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations.

Authors:  Susan M Wolf; Rebecca Branum; 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:  2015       Impact factor: 1.718

2.  Disclosure of secondary findings in exome sequencing of 2480 Japanese cancer patients.

Authors:  Yasue Horiuchi; Hiroyuki Matsubayashi; Yoshimi Kiyozumi; Seiichiro Nishimura; Satomi Higashigawa; Nobuhiro Kado; Takeshi Nagashima; Maki Mizuguchi; Sumiko Ohnami; Makoto Arai; Kenichi Urakami; Masatoshi Kusuhara; Ken Yamaguchi
Journal:  Hum Genet       Date:  2020-07-24       Impact factor: 4.132

3.  Attitudes Toward Return of Genetic Research Results to Relatives, Including After Death: Comparison of Cancer Probands, Blood Relatives, and Spouse/Partners.

Authors:  Carmen Radecki Breitkopf; Susan M Wolf; Kari G Chaffee; Marguerite E Robinson; Noralane M Lindor; Deborah R Gordon; Barbara A Koenig; Gloria M Petersen
Journal:  J Empir Res Hum Res Ethics       Date:  2018-04-27       Impact factor: 1.742

4.  Returning Results: Let's Be Honest!

Authors:  Bernice S Elger; Eva De Clercq
Journal:  Genet Test Mol Biomarkers       Date:  2017-02-24

5.  Preferences for the Return of Individual Results From Research on Pediatric Biobank Samples.

Authors:  Kurt D Christensen; Sarah K Savage; Noelle L Huntington; Elissa R Weitzman; Sonja I Ziniel; Phoebe L Bacon; Cara N Cacioppo; Robert C Green; Ingrid A Holm
Journal:  J Empir Res Hum Res Ethics       Date:  2017-04       Impact factor: 1.742

6.  Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles.

Authors:  Laura M Beskow; P Pearl O'Rourke
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

7.  Psychological Impact of Learning CDKN2A Variant Status as a Genetic Research Result.

Authors:  Xuan Zhu; Emma R Leof; Kari G Rabe; Jennifer B McCormick; Gloria M Petersen; Carmen Radecki Breitkopf
Journal:  Public Health Genomics       Date:  2019-04-18       Impact factor: 2.000

Review 8.  Defining the Clinical Value of a Genomic Diagnosis in the Era of Next-Generation Sequencing.

Authors:  Natasha T Strande; Jonathan S Berg
Journal:  Annu Rev Genomics Hum Genet       Date:  2016-05-26       Impact factor: 8.929

9.  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

10.  Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family Preferences.

Authors:  Deborah R Gordon; Carmen Radecki Breitkopf; Marguerite Robinson; Wesley O Petersen; Jason S Egginton; Kari G Chaffee; Gloria M Petersen; Susan M Wolf; Barbara A Koenig
Journal:  AJOB Empir Bioeth       Date:  2018-12-31
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