Literature DB >> 26479557

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

Laura M Amendola1, Martha Horike-Pyne2, Susan B Trinidad3, Stephanie M Fullerton4, Barbara J Evans5, Wylie Burke6, Gail P Jarvik7.   

Abstract

The informed consent process for genetic testing does not commonly address preferences regarding disclosure of results in the event of the patient's death. Adults being tested for familial colorectal cancer were asked whether they want their exome sequencing results disclosed to another person in the event of their death prior to receiving the results. Of 78 participants, 92% designated an individual and 8% declined to. Further research will help refine practices for informed consent.
© 2015 American Society of Law, Medicine & Ethics, Inc.

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Year:  2015        PMID： 26479557      PMCID： PMC4617192          DOI： 10.1111/jlme.12290

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


  14 in total

Review 1.  Communicating genetic information in families--a review of guidelines and position papers.

Authors:  Laura E Forrest; Martin B Delatycki; Loane Skene; MaryAnne Aitken
Journal:  Eur J Hum Genet       Date:  2007-03-28       Impact factor: 4.246

Review 2.  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

3.  Risks to relatives in genomic research: a duty to warn?

Authors:  Yvonne Bombard; Kenneth Offit; Mark E Robson
Journal:  Am J Bioeth       Date:  2012       Impact factor: 11.229

4.  Disclosing individual genetic research results to deceased participants' relatives by means of a qualified disclosure policy.

Authors:  Annelien L Bredenoord; Johannes J M van Delden
Journal:  Am J Bioeth       Date:  2012       Impact factor: 11.229

5.  Family Communication and Genetic Counseling: The Case of Hereditary Breast and Ovarian Cancer.

Authors:  J Green; M Richards; F Murton; H Statham; N Hallowell
Journal:  J Genet Couns       Date:  1997-03       Impact factor: 2.537

6.  Beneficence, clinical urgency, and the return of individual research results to relatives.

Authors:  Stephanie M Fullerton; Susan Brown Trinidad; Gail P Jarvik; Wylie Burke
Journal:  Am J Bioeth       Date:  2012       Impact factor: 11.229

7.  "The cancer bond": exploring the formation of cancer risk perception in families with Lynch syndrome.

Authors:  Aunchalee E L Palmquist; Laura M Koehly; Susan K Peterson; Margarette Shegog; Sally W Vernon; Ellen R Gritz
Journal:  J Genet Couns       Date:  2010-04-17       Impact factor: 2.537

8.  The "duty to warn" a patient's family members about hereditary disease risks.

Authors:  Kenneth Offit; Elizabeth Groeger; Sam Turner; Eve A Wadsworth; Mary A Weiser
Journal:  JAMA       Date:  2004-09-22       Impact factor: 56.272

9.  Family communication in a population at risk for hypertrophic cardiomyopathy.

Authors:  Brittany Batte; Jane P Sheldon; Patricia Arscott; Darcy J Huismann; Lisa Salberg; Sharlene M Day; Beverly M Yashar
Journal:  J Genet Couns       Date:  2014-10-12       Impact factor: 2.537

10.  The role of women in the donation consent decision: building on previous research.

Authors:  Diane Dodd-McCue; Alexander Tartaglia; Robin Cowherd
Journal:  Prog Transplant       Date:  2007-09       Impact factor: 1.065
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  12 in total

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

Authors:  Carmen Radecki Breitkopf; Gloria M Petersen; Susan M Wolf; Kari G Chaffee; Marguerite E Robinson; Deborah R Gordon; Noralane M Lindor; Barbara A Koenig
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

2.  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

3.  Challenges in returning results in a genomic medicine implementation study: the Return of Actionable Variants Empirical (RAVE) study.

Authors:  David C Kochan; Erin Winkler; Noralane Lindor; Gabriel Q Shaibi; Janet Olson; Pedro J Caraballo; Robert Freimuth; Joel E Pacyna; Carmen Radecki Breitkopf; Richard R Sharp; Iftikhar J Kullo
Journal:  NPJ Genom Med       Date:  2020-05-04       Impact factor: 8.617

4.  Traceback: A Proposed Framework to Increase Identification and Genetic Counseling of BRCA1 and BRCA2 Mutation Carriers Through Family-Based Outreach.

Authors:  Goli Samimi; Marcus Q Bernardini; Lawrence C Brody; Charlisse F Caga-Anan; Ian G Campbell; Georgia Chenevix-Trench; Fergus J Couch; Michael Dean; Joanne A de Hullu; Susan M Domchek; Ronny Drapkin; Heather Spencer Feigelson; Michael Friedlander; Mia M Gaudet; Marline G Harmsen; Karen Hurley; Paul A James; Janice S Kwon; Felicitas Lacbawan; Stephanie Lheureux; Phuong L Mai; Leah E Mechanic; Lori M Minasian; Evan R Myers; Mark E Robson; Susan J Ramus; Lisa F Rezende; Patricia A Shaw; Thomas P Slavin; Elizabeth M Swisher; Masataka Takenaka; David D Bowtell; Mark E Sherman
Journal:  J Clin Oncol       Date:  2017-04-11       Impact factor: 44.544

5.  "If relatives inherited the gene, they should inherit the data." Bringing the family into the room where bioethics happens.

Authors:  Deborah R Gordon; Barbara A Koenig
Journal:  New Genet Soc       Date:  2021-12-13

Review 6.  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

7.  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

8.  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

Review 9.  Views on genomic research result delivery methods and informed consent: a review.

Authors:  Danya F Vears; Joel T Minion; Stephanie J Roberts; James Cummings; Mavis Machirori; Madeleine J Murtagh
Journal:  Per Med       Date:  2021-04-06       Impact factor: 2.512

10.  Discordance in selected designee for return of genomic findings in the event of participant death and estate executor.

Authors:  Jessie L Goodman; Laura M Amendola; Martha Horike-Pyne; Susan B Trinidad; Stephanie M Fullerton; Wylie Burke; Gail P Jarvik
Journal:  Mol Genet Genomic Med       Date:  2017-01-16       Impact factor: 2.183
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