Literature DB >> 22669414

Publics and biobanks: Pan-European diversity and the challenge of responsible innovation.

George Gaskell1, Herbert Gottweis, Johannes Starkbaum, Monica M Gerber, Jacqueline Broerse, Ursula Gottweis, Abbi Hobbs, Ilpo Helén, Maria Paschou, Karoliina Snell, Alexandra Soulier.   

Abstract

This article examines public perceptions of biobanks in Europe using a multi-method approach combining quantitative and qualitative data. It is shown that public support for biobanks in Europe is variable and dependent on a range of interconnected factors: people's engagement with biobanks; concerns about privacy and data security, and trust in the socio-political system, key actors and institutions involved in biobanks. We argue that the biobank community needs to acknowledge the impact of these factors if they are to successfully develop and integrate biobanks at a pan-European level.

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Year:  2012        PMID: 22669414      PMCID: PMC3522201          DOI: 10.1038/ejhg.2012.104

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


  18 in total

1.  Informed consent: Biobank donors should have a say.

Authors:  Brenda Spencer; Daria Koutaissoff; Hans-Anton Lehr
Journal:  Nature       Date:  2012-01-25       Impact factor: 49.962

2.  Consent to 'personal' genomics and privacy. Direct-to-consumer genetic tests and population genome research challenge traditional notions of privacy and consent.

Authors:  Bartha Maria Knoppers
Journal:  EMBO Rep       Date:  2010-05-07       Impact factor: 8.807

3.  The privacy-reciprocity connection in biobanking: comparing German with UK strategies.

Authors:  A Hobbs; J Starkbaum; U Gottweis; H E Wichmann; H Gottweis
Journal:  Public Health Genomics       Date:  2012-06-20       Impact factor: 2.000

4.  Biobanks and the phantom public.

Authors:  Herbert Gottweis; Haidan Chen; Johannes Starkbaum
Journal:  Hum Genet       Date:  2011-07-20       Impact factor: 4.132

Review 5.  The ethics of research biobanking: a critical review of the literature.

Authors:  Klaus Hoeyer
Journal:  Biotechnol Genet Eng Rev       Date:  2008

Review 6.  Tissue donation to biobanks: a review of sociological studies.

Authors:  Wendy Lipworth; Rowena Forsyth; Ian Kerridge
Journal:  Sociol Health Illn       Date:  2011-05-18

7.  Public and biobank participant attitudes toward genetic research participation and data sharing.

Authors:  A A Lemke; W A Wolf; J Hebert-Beirne; M E Smith
Journal:  Public Health Genomics       Date:  2010-01-15       Impact factor: 2.000

8.  Attitudes towards biomedical use of tissue sample collections, consent, and biobanks among Finns.

Authors:  Aaro Tupasela; Sinikka Sihvo; Karolna Snell; Pa Jallinoja; Arja R Aro; Elina Hemminki
Journal:  Scand J Public Health       Date:  2009-11-11       Impact factor: 3.021

9.  Public opinion about the importance of privacy in biobank research.

Authors:  David J Kaufman; Juli Murphy-Bollinger; Joan Scott; Kathy L Hudson
Journal:  Am J Hum Genet       Date:  2009-10-29       Impact factor: 11.025

10.  Trends in ethical and legal frameworks for the use of human biobanks.

Authors:  A Cambon-Thomsen; E Rial-Sebbag; B M Knoppers
Journal:  Eur Respir J       Date:  2007-08       Impact factor: 16.671

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  43 in total

1.  Factors influencing public participation in biobanking.

Authors:  Mamoun Ahram; Areej Othman; Manal Shahrouri; Ebtihal Mustafa
Journal:  Eur J Hum Genet       Date:  2013-08-07       Impact factor: 4.246

2.  Public Attitudes Toward Precision Medicine: A Nationwide Survey on Developing a National Cohort Program for Citizen Participation in the Republic of Korea.

Authors:  Hannah Kim; Hye Ryun Kim; Sumin Kim; Eugene Kim; So Yoon Kim; Hyun-Young Park
Journal:  Front Genet       Date:  2020-05-12       Impact factor: 4.599

3.  National survey and community advisory board development for a bipolar disorder biobank.

Authors:  Mark A Frye; Allen Doederlein; Barbara Koenig; Susan L McElroy; Malik Nassan; Lisa R Seymour; Joanna M Biernacka; Allen S Daniels
Journal:  Bipolar Disord       Date:  2015-08-20       Impact factor: 6.744

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

5.  Seeing Beyond the Margins: Challenges to Informed Inclusion of Vulnerable Populations in Research.

Authors:  Sarah Gehlert; Jessica Mozersky
Journal:  J Law Med Ethics       Date:  2018-03-27       Impact factor: 1.718

6.  A Mobilising Concept? Unpacking Academic Representations of Responsible Research and Innovation.

Authors:  Barbara E Ribeiro; Robert D J Smith; Kate Millar
Journal:  Sci Eng Ethics       Date:  2016-03-08       Impact factor: 3.525

7.  Patient/family views on data sharing in rare diseases: study in the European LeukoTreat project.

Authors:  Sylviane Darquy; Grégoire Moutel; Anne-Sophie Lapointe; Diane D'Audiffret; Julie Champagnat; Samia Guerroui; Marie-Louise Vendeville; Odile Boespflug-Tanguy; Nathalie Duchange
Journal:  Eur J Hum Genet       Date:  2015-06-17       Impact factor: 4.246

8.  Broad Consent for Research With Biological Samples: Workshop Conclusions.

Authors:  Christine Grady; Lisa Eckstein; Ben Berkman; Dan Brock; Robert Cook-Deegan; Stephanie M Fullerton; Hank Greely; Mats G Hansson; Sara Hull; Scott Kim; Bernie Lo; Rebecca Pentz; Laura Rodriguez; Carol Weil; Benjamin S Wilfond; David Wendler
Journal:  Am J Bioeth       Date:  2015       Impact factor: 11.229

9.  Broad consent in practice: lessons learned from a hospital-based biobank for prospective research on genomic and medical data.

Authors:  Gaia Barazzetti; Francesca Bosisio; Daria Koutaissoff; Brenda Spencer
Journal:  Eur J Hum Genet       Date:  2020-02-21       Impact factor: 4.246

10.  Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries.

Authors:  Richard Milne; Katherine I Morley; Mohamed A Almarri; Shamim Anwer; Jerome Atutornu; Elena E Baranova; Paul Bevan; Maria Cerezo; Yali Cong; Alessia Costa; Christine Critchley; Josepine Fernow; Peter Goodhand; Qurratulain Hasan; Aiko Hibino; Gry Houeland; Heidi C Howard; S Zakir Hussain; Charlotta Ingvoldstad Malmgren; Vera L Izhevskaya; Aleksandra Jędrzejak; Cao Jinhong; Megumi Kimura; Erika Kleiderman; Brandi Leach; Keying Liu; Deborah Mascalzoni; Álvaro Mendes; Jusaku Minari; Dianne Nicol; Emilia Niemiec; Christine Patch; Jack Pollard; Barbara Prainsack; Marie Rivière; Lauren Robarts; Jonathan Roberts; Virginia Romano; Haytham A Sheerah; James Smith; Alexandra Soulier; Claire Steed; Vigdis Stefànsdóttir; Cornelia Tandre; Adrian Thorogood; Torsten H Voigt; Nan Wang; Anne V West; Go Yoshizawa; Anna Middleton
Journal:  Genome Med       Date:  2021-05-25       Impact factor: 11.117

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