Literature DB >> 30008546

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

Susan M Wolf1, Emily Scholtes1, Barbara A Koenig1, Gloria M Petersen1, Susan A Berry1, Laura M Beskow1, Mary B Daly1, Conrad V Fernandez1, Robert C Green1, Bonnie S LeRoy1, Noralane M Lindor1, P Pearl O'Rourke1, Carmen Radecki Breitkopf1, Mark A Rothstein1, Brian Van Ness1, Benjamin S Wilfond1.   

Abstract

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Year:  2018        PMID： 30008546      PMCID： PMC6040667          DOI： 10.1177/1073110518766024

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


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  31 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.  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

4.  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

5.  Raising Genomic Citizens: Adolescents and the Return of Secondary Genomic Findings.

Authors:  Maya Sabatello; Paul S Appelbaum
Journal:  J Law Med Ethics       Date:  2016-06       Impact factor: 1.718

6.  Perspectives on what is needed to implement genomic medicine.

Authors:  Marc S Williams
Journal:  Mol Genet Genomic Med       Date:  2015-05       Impact factor: 2.183

7.  Family decision maker perspectives on the return of genetic results in biobanking research.

Authors:  Laura A Siminoff; Heather M Traino; Maghboeba Mosavel; Laura Barker; Glencora Gudger; Anita Undale
Journal:  Genet Med       Date:  2015-04-09       Impact factor: 8.822

8.  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

9.  Communication of genetic test results to family and health-care providers following disclosure of research results.

Authors:  Kristi D Graves; Pamela S Sinicrope; Mary Jane Esplen; Susan K Peterson; Christi A Patten; Jan Lowery; Frank A Sinicrope; Sandra K Nigon; Joyce Borgen; Sherri Sheinfeld Gorin; Louise A Keogh; Noralane M Lindor
Journal:  Genet Med       Date:  2013-10-03       Impact factor: 8.822

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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  5 in total

1.  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

2.  The Responsibility to Recontact Research Participants after Reinterpretation of Genetic and Genomic Research Results.

Authors:  Yvonne Bombard; Kyle B Brothers; Sara Fitzgerald-Butt; Nanibaa' A Garrison; Leila Jamal; Cynthia A James; Gail P Jarvik; Jennifer B McCormick; Tanya N Nelson; Kelly E Ormond; Heidi L Rehm; Julie Richer; Emmanuelle Souzeau; Jason L Vassy; Jennifer K Wagner; Howard P Levy
Journal:  Am J Hum Genet       Date:  2019-04-04       Impact factor: 11.025

Review 3.  Informed Consent in Biomedical Research.

Authors:  Fida K Dankar; Marton Gergely; Samar K Dankar
Journal:  Comput Struct Biotechnol J       Date:  2019-03-25       Impact factor: 7.271

4.  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

5.  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
  5 in total

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