Literature DB >> 24262096

Stakeholder views on returning research results.

Susanne B Haga1, Jennifer Q Zhao.   

Abstract

While the disclosure of research findings is relevant to all types of biomedical research, it has garnered particular attention with respect to genetics and genomics research due to some of the unique aspects of the data and the high public profile of the field. In this chapter, we review the attitudes of stakeholders (research participants, policymakers, and researchers) to define areas of consensus regarding the issue of returning research results across and within groups. In addition to stakeholder attitudes about obligations and interest in research results, other major related issues related to returning research results, such as informed consent, communication of research results, and cost, are discussed. Given the consensus between stakeholders to return summary reports of a study's outcomes and individual research results of clinical significance, we conclude that the time has come to encourage, if not require, researchers to consider these issues in the developmental planning stages of a project and to plan and budget accordingly.
© 2013 Elsevier Inc. All rights reserved.

Entities:  

Keywords:  Attitudes; Consent; Ethics; Human subjects protection; Research results

Mesh:

Year:  2013        PMID: 24262096     DOI: 10.1016/B978-0-12-407703-4.00002-5

Source DB:  PubMed          Journal:  Adv Genet        ISSN: 0065-2660            Impact factor:   1.944


  10 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.  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

3.  Decision role preferences for return of results from genome sequencing amongst young breast cancer patients.

Authors:  Cindy B Matsen; Sarah Lyons; Melody S Goodman; Barbara B Biesecker; Kimberly A Kaphingst
Journal:  Patient Educ Couns       Date:  2018-08-04

Review 4.  Biobanks and personalized medicine.

Authors:  J E Olson; S J Bielinski; E Ryu; E M Winkler; P Y Takahashi; J Pathak; J R Cerhan
Journal:  Clin Genet       Date:  2014-03-27       Impact factor: 4.438

5.  Return of genomic results to research participants: the floor, the ceiling, and the choices in between.

Authors:  Gail P Jarvik; Laura M Amendola; Jonathan S Berg; Kyle Brothers; Ellen W Clayton; Wendy Chung; Barbara J Evans; James P Evans; Stephanie M Fullerton; Carlos J Gallego; Nanibaa' A Garrison; Stacy W Gray; Ingrid A Holm; Iftikhar J Kullo; Lisa Soleymani Lehmann; Cathy McCarty; Cynthia A Prows; Heidi L Rehm; Richard R Sharp; Joseph Salama; Saskia Sanderson; Sara L Van Driest; Marc S Williams; Susan M Wolf; Wendy A Wolf; Wylie Burke
Journal:  Am J Hum Genet       Date:  2014-05-08       Impact factor: 11.025

Review 6.  Opening Pandora's box?: ethical issues in prenatal whole genome and exome sequencing.

Authors:  Ruth Horn; Michael Parker
Journal:  Prenat Diagn       Date:  2017-08-07       Impact factor: 3.050

7.  Parent Perspectives Towards Genetic and Epigenetic Testing for Autism Spectrum Disorder.

Authors:  Kayla E Wagner; Jennifer B McCormick; Sarah Barns; Molly Carney; Frank A Middleton; Steven D Hicks
Journal:  J Autism Dev Disord       Date:  2019-03-22

8.  Prioritizing Approaches to Engage Community Members and Build Trust in Biobanks: A Survey of Attitudes and Opinions of Adults within Outpatient Practices at the University of Maryland.

Authors:  Casey Lynnette Overby; Kristin A Maloney; Tameka DeShawn Alestock; Justin Chavez; David Berman; Reem Maged Sharaf; Tom Fitzgerald; Eun-Young Kim; Kathleen Palmer; Alan R Shuldiner; Braxton D Mitchell
Journal:  J Pers Med       Date:  2015-07-28

9.  Regarding the Yin and Yang of Precision Cancer- Screening and Treatment: Are We Creating a Neglected Majority?

Authors:  Colleen M McBride; Yue Guan; Jennifer L Hay
Journal:  Int J Environ Res Public Health       Date:  2019-10-29       Impact factor: 3.390

10.  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

  10 in total

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