Literature DB >> 22126749

Researchers' opinions towards the communication of results of biobank research: a survey study.

Tineke M Meulenkamp1, Sjef J K Gevers, Jasper A Bovenberg, Ellen M A Smets.   

Abstract

Eighty Dutch investigators (response 41%) involved in biobank research responded to a web-based survey addressing communication of results of biobank research to individual participants. Questions addressed their opinion towards an obligation to communicate results and related issues such as ownership of blood samples, privacy, therapeutic relationship, costs and implications for participants. Most researchers (74%) indicated that participants only have to be informed when results have implications for treatment or prevention. Researchers were generally not inclined to provide more feedback to patients as compared with healthy participants, nor were they inclined to provide feedback in return for participants' contribution to the biobank. Our results demonstrate major and significant differences in opinion about the feedback of individual results within the community of biobank researchers.

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Year:  2011        PMID: 22126749      PMCID: PMC3283180          DOI: 10.1038/ejhg.2011.216

Source DB:  PubMed          Journal:  Eur J Hum Genet        ISSN: 1018-4813            Impact factor:   4.246


  21 in total

1.  One size does not fit all.

Authors:  Flavia M Facio
Journal:  Am J Bioeth       Date:  2006 Nov-Dec       Impact factor: 11.229

2.  The search for clarity in communicating research results to study participants.

Authors:  D I Shalowitz; F G Miller
Journal:  J Med Ethics       Date:  2008-09       Impact factor: 2.903

3.  The emergence of an ethical duty to disclose genetic research results: international perspectives.

Authors:  Bartha Maria Knoppers; Yann Joly; Jacques Simard; Francine Durocher
Journal:  Eur J Hum Genet       Date:  2006-07-26       Impact factor: 4.246

4.  Informed consent and subject motivation to participate in a large, population-based genomics study: the Marshfield Clinic Personalized Medicine Research Project.

Authors:  Catherine A McCarty; Anuradha Nair; Diane M Austin; Philip F Giampietro
Journal:  Community Genet       Date:  2007

Review 5.  The law of incidental findings in human subjects research: establishing researchers' duties.

Authors:  Susan M Wolf; Jordan Paradise; Charlisse Caga-anan
Journal:  J Law Med Ethics       Date:  2008       Impact factor: 1.718

6.  Obtaining insurance after DNA diagnostics: a survey among hypertrophic cardiomyopathy mutation carriers.

Authors:  Imke Christiaans; Tjitske M Kok; Irene M van Langen; Erwin Birnie; Gouke J Bonsel; Arthur A M Wilde; Ellen M A Smets
Journal:  Eur J Hum Genet       Date:  2009-08-12       Impact factor: 4.246

7.  Duty to disclose what? Querying the putative obligation to return research results to participants.

Authors:  F A Miller; R Christensen; M Giacomini; J S Robert
Journal:  J Med Ethics       Date:  2008-03       Impact factor: 2.903

8.  Is it ethical to deny genetic research participants individualised results?

Authors:  P Affleck
Journal:  J Med Ethics       Date:  2009-04       Impact factor: 2.903

9.  Informed consent for biorepositories: assessing prospective participants' understanding and opinions.

Authors:  Laura M Beskow; Elizabeth Dean
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2008-06       Impact factor: 4.254

10.  Subjects matter: a survey of public opinions about a large genetic cohort study.

Authors:  David Kaufman; Juli Murphy; Joan Scott; Kathy Hudson
Journal:  Genet Med       Date:  2008-11       Impact factor: 8.822

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  10 in total

Review 1.  Health professionals' opinions on supporting a cancer biobank: identification of barriers to combat biobanking pitfalls.

Authors:  Nicole J Caixeiro; Hei Lan Byun; Joseph Descallar; Janelle V Levesque; Paul de Souza; Cheok Soon Lee
Journal:  Eur J Hum Genet       Date:  2015-09-02       Impact factor: 4.246

2.  Returning Results: Let's Be Honest!

Authors:  Bernice S Elger; Eva De Clercq
Journal:  Genet Test Mol Biomarkers       Date:  2017-02-24

3.  Returning a Research Participant's Genomic Results to Relatives: Perspectives from Managers of Two Distinct Research Biobanks.

Authors:  Gloria M Petersen; Brian Van Ness
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

4.  Scientists' perspectives on consent in the context of biobanking research.

Authors:  Zubin Master; Lisa Campo-Engelstein; Timothy Caulfield
Journal:  Eur J Hum Genet       Date:  2014-07-30       Impact factor: 4.246

Review 5.  Stakeholders' perspectives on biobank-based genomic research: systematic review of the literature.

Authors:  Alma Husedzinovic; Dominik Ose; Christoph Schickhardt; Stefan Fröhling; Eva C Winkler
Journal:  Eur J Hum Genet       Date:  2015-03-04       Impact factor: 4.246

6.  Return of individual research results from genomic research: A systematic review of stakeholder perspectives.

Authors:  Danya F Vears; Joel T Minion; Stephanie J Roberts; James Cummings; Mavis Machirori; Mwenza Blell; Isabelle Budin-Ljøsne; Lorraine Cowley; Stephanie O M Dyke; Clara Gaff; Robert Green; Alison Hall; Amber L Johns; Bartha M Knoppers; Stephanie Mulrine; Christine Patch; Eva Winkler; Madeleine J Murtagh
Journal:  PLoS One       Date:  2021-11-08       Impact factor: 3.240

7.  Return of genetic results in the familial dilated cardiomyopathy research project.

Authors:  Jill D Siegfried; Ana Morales; Jessica D Kushner; Emily Burkett; Jason Cowan; Ana Clara Mauro; Gordon S Huggins; Duanxiang Li; Nadine Norton; Ray E Hershberger
Journal:  J Genet Couns       Date:  2012-08-11       Impact factor: 2.537

8.  Incidental findings from clinical sequencing in Greece: reporting experts' attitudes.

Authors:  E G Gourna; N Armstrong; S E Wallace
Journal:  J Community Genet       Date:  2014-07-22

9.  "It's all about trust": reflections of researchers on the complexity and controversy surrounding biobanking in South Africa.

Authors:  Keymanthri Moodley; Shenuka Singh
Journal:  BMC Med Ethics       Date:  2016-10-10       Impact factor: 2.652

10.  Genomic information and a person's right not to know: A closer look at variations in hypothetical informational preferences in a German sample.

Authors:  Laura Flatau; Markus Reitt; Gunnar Duttge; Christian Lenk; Barbara Zoll; Wolfgang Poser; Alexandra Weber; Urs Heilbronner; Marcella Rietschel; Jana Strohmaier; Rebekka Kesberg; Jonas Nagel; Thomas G Schulze
Journal:  PLoS One       Date:  2018-06-20       Impact factor: 3.240

  10 in total

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