Literature DB >> 26479555

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

Susan M Wolf1, Rebecca Branum2, Barbara A Koenig3, Gloria M Petersen4, Susan A Berry5, Laura M Beskow6, Mary B Daly7, Conrad V Fernandez8, Robert C Green9, Bonnie S LeRoy10, Noralane M Lindor11, P Pearl O'Rourke12, Carmen Radecki Breitkopf13, Mark A Rothstein14, Brian Van Ness15, Benjamin S Wilfond16.   

Abstract

Genomic research results and incidental findings with health implications for a research participant are of potential interest not only to the participant, but also to the participant's family. Yet investigators lack guidance on return of results to relatives, including after the participant's death. In this paper, a national working group offers consensus analysis and recommendations, including an ethical framework to guide investigators in managing this challenging issue, before and after the participant's death.
© 2015 American Society of Law, Medicine & Ethics, Inc.

Entities:  

Mesh：

Year:  2015        PMID： 26479555      PMCID： PMC4617203          DOI： 10.1111/jlme.12288

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


  73 in total

1.  Ethical and legal aspects of sperm retrieval after death or persistent vegetative state.

Authors:  C Strong
Journal:  J Law Med Ethics       Date:  1999       Impact factor: 1.718

2.  The ancillary-care responsibilities of medical researchers. An ethical framework for thinking about the clinical care that researchers owe their subjects.

Authors:  Henry S Richardson; Leah Belsky
Journal:  Hastings Cent Rep       Date:  2004 Jan-Feb       Impact factor: 2.683

3.  What should the law say about disclosure of genetic information to relatives?

Authors:  E W Clayton
Journal:  J Health Care Law Policy       Date:  1998

Review 4.  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

5.  Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients.

Authors:  Erna Claes; Gerry Evers-Kiebooms; Andrea Boogaerts; Marleen Decruyenaere; Lieve Denayer; Eric Legius
Journal:  Am J Med Genet A       Date:  2003-01-01       Impact factor: 2.802

6.  Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems.

Authors:  N Hallowell; A Ardern-Jones; R Eeles; C Foster; A Lucassen; C Moynihan; M Watson
Journal:  Clin Genet       Date:  2005-06       Impact factor: 4.438

7.  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

8.  Colorectal cancer survivors undergoing genetic testing for hereditary non-polyposis colorectal cancer: motivational factors and psychosocial functioning.

Authors:  M J Esplen; L Madlensky; M Aronson; H Rothenmund; S Gallinger; K Butler; B Toner; J Wong; M Manno; J McLaughlin
Journal:  Clin Genet       Date:  2007-09-24       Impact factor: 4.438

9.  American Society of Clinical Oncology policy statement update: genetic testing for cancer susceptibility.

Authors: 
Journal:  J Clin Oncol       Date:  2003-04-11       Impact factor: 44.544

Review 10.  Managing incidental findings in human subjects research: analysis and recommendations.

Authors:  Susan M Wolf; Frances P Lawrenz; Charles A Nelson; Jeffrey P Kahn; Mildred K Cho; Ellen Wright Clayton; Joel G Fletcher; Michael K Georgieff; Dale Hammerschmidt; Kathy Hudson; Judy Illes; Vivek Kapur; Moira A Keane; Barbara A Koenig; Bonnie S Leroy; Elizabeth G McFarland; Jordan Paradise; Lisa S Parker; Sharon F Terry; Brian Van Ness; Benjamin S Wilfond
Journal:  J Law Med Ethics       Date:  2008       Impact factor: 1.718
View more
  41 in total

1.  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

2.  Active Disclosure of Secondary Germline Findings to Deceased Research Participants' Personal Representatives: Process and Outcomes.

Authors:  Molly Daniels; Chetna Wathoo; Lauren Brusco; Karen H Lu; Kenna Shaw; Ecaterina E Ileana Dumbrava; Banu Arun; Louise Strong; Jennifer K Litton; Karina Eterovic; Ugur Aytac; John Mendelsohn; Gordon B Mills; Ken Chen; Funda Meric-Bernstam
Journal:  JCO Precis Oncol       Date:  2017-10-31

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

Review 4.  Ethical considerations in genomic testing for hematologic disorders.

Authors:  Jonathan M Marron; Steven Joffe
Journal:  Blood       Date:  2017-06-09       Impact factor: 22.113

5.  My Identical Twin Sequenced our Genome.

Authors:  Samantha L P Schilit; Arielle Schilit Nitenson
Journal:  J Genet Couns       Date:  2016-11-16       Impact factor: 2.537

6.  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

Review 7.  Within and beyond the communal turn to informed consent in industry-sponsored pharmacogenetics research: merits and challenges of community advisory boards.

Authors:  Hojjat Soofi; Evert van Leeuwen
Journal:  J Community Genet       Date:  2016-08-05

8.  Researcher and institutional review board perspectives on the benefits and challenges of reporting back biomonitoring and environmental exposure results.

Authors:  Jennifer Liss Ohayon; Elicia Cousins; Phil Brown; Rachel Morello-Frosch; Julia Green Brody
Journal:  Environ Res       Date:  2016-12-10       Impact factor: 6.498

9.  Development of a consensus approach for return of pathology incidental findings in the Genotype-Tissue Expression (GTEx) project.

Authors:  Nicole C Lockhart; Carol J Weil; Latarsha J Carithers; Susan E Koester; A Roger Little; Simona Volpi; Helen M Moore; Benjamin E Berkman
Journal:  J Med Ethics       Date:  2018-06-14       Impact factor: 2.903

Review 10.  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
View more

北京卡尤迪生物科技股份有限公司 © 2022-2023.