Literature DB >> 22084844

Return of research results: general principles and international perspectives.

Emmanuelle Lévesque1, Yann Joly, Jacques Simard.   

Abstract

Five years ago, an article co-written by two of us (Joly and Simard) presented an emerging trend to disclose certain individual genetic results to research participants. Since then, both technologies and research practices have evolved significantly. Given this rapid evolution, our goal is to provide updated and thorough guidance on this issue. Our paper begins by identifying the ethical principles that support the return of results: justice, beneficence, and respect for persons. Then, it presents the results of an analysis of international norms on the return of results, covering both general and individual research results. It reveals existing divergence and consensus on these topics within the international community. With the goal of promoting greater harmonization, we conclude by proposing a flexible framework for the return of individual research results.
© 2011 American Society of Law, Medicine & Ethics, Inc.

Entities:  

Mesh:

Year:  2011        PMID: 22084844     DOI: 10.1111/j.1748-720X.2011.00625.x

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


  11 in total

1.  International Policies on Sharing Genomic Research Results with Relatives: Approaches to Balancing Privacy with Access.

Authors:  Rebecca Branum; Susan M Wolf
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

2.  Appraising Harm in Phase I Trials: Healthy Volunteers' Accounts of Adverse Events.

Authors:  Lisa McManus; Arlene Davis; Rebecca L Forcier; Jill A Fisher
Journal:  J Law Med Ethics       Date:  2019-06       Impact factor: 1.718

3.  Using AD biomarker research results for clinical care: a survey of ADNI investigators.

Authors:  Melanie B Shulman; Kristin Harkins; Robert C Green; Jason Karlawish
Journal:  Neurology       Date:  2013-08-21       Impact factor: 9.910

4.  "Maybe they have found something new" participants' views on returning cohort psychosocial survey results.

Authors:  Eve Bureau; Isabelle Pellegrini; Catherine Noguès; Christine Lasset; Claire Julian-Reynier
Journal:  Health Expect       Date:  2014-05-30       Impact factor: 3.377

5.  Ethical considerations of research policy for personal genome analysis: the approach of the Genome Science Project in Japan.

Authors:  Jusaku Minari; Tetsuya Shirai; Kazuto Kato
Journal:  Life Sci Soc Policy       Date:  2014-04-05

6.  An implementation framework for the feedback of individual research results and incidental findings in research.

Authors:  Adrian Thorogood; Yann Joly; Bartha Maria Knoppers; Tommy Nilsson; Peter Metrakos; Anthoula Lazaris; Ayat Salman
Journal:  BMC Med Ethics       Date:  2014-12-23       Impact factor: 2.652

Review 7.  Managing "incidental findings" in biobank research: Recommendations of the Taiwan biobank.

Authors:  Jui-Chu Lin; Wesley Wei-Wen Hsiao; Chien-Te Fan
Journal:  Comput Struct Biotechnol J       Date:  2019-08-02       Impact factor: 7.271

8.  Frequency and format of clinical trial results dissemination to patients: a survey of authors of trials indexed in PubMed.

Authors:  Sara Schroter; Amy Price; Mario Malički; Tessa Richards; Mike Clarke
Journal:  BMJ Open       Date:  2019-10-21       Impact factor: 2.692

Review 9.  Funding considerations for the disclosure of genetic incidental findings in biobank research.

Authors:  L Black; D Avard; M H Zawati; B M Knoppers; J Hébert; G Sauvageau
Journal:  Clin Genet       Date:  2013-06-10       Impact factor: 4.438

10.  Perspectives on Communicating Biomarker-Based Assessments of Alzheimer's Disease to Cognitively Healthy Individuals.

Authors:  Richard Milne; Eline Bunnik; Ana Diaz; Edo Richard; Shirlene Badger; Dianne Gove; Jean Georges; Karine Fauria; Jose-Luis Molinuevo; Katie Wells; Craig Ritchie; Carol Brayne
Journal:  J Alzheimers Dis       Date:  2018       Impact factor: 4.472

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