Literature DB >> 29856292

'Your DNA, Your Say': global survey gathering attitudes toward genomics: design, delivery and methods.

Anna Middleton1,2, Emilia Niemiec3, Barbara Prainsack4, Jason Bobe5, Lauren Farley1, Claire Steed6, James Smith6, Paul Bevan6, Natasha Bonhomme7, Erika Kleiderman8, Adrian Thorogood8, Christoph Schickhardt9, Chiara Garattini10, Danya Vears11, Katherine Littler12, Natalie Banner12, Erick Scott5, Nadezda V Kovalevskaya13, Elissa Levin14, Katherine I Morley1,15,16, Heidi C Howard1,3.   

Abstract

Our international study, 'Your DNA, Your Say', uses film and an online cross-sectional survey to gather public attitudes toward the donation, access and sharing of DNA information. We describe the methodological approach used to create an engaging and bespoke survey, suitable for translation into many different languages. We address some of the particular challenges in designing a survey on the subject of genomics. In order to understand the significance of a genomic result, researchers and clinicians alike use external databases containing DNA and medical information from thousands of people. We ask how publics would like their 'anonymous' data to be used (or not to be used) and whether they are concerned by the potential risks of reidentification; the results will be used to inform policy.

Entities:  

Keywords:  attitudes; data sharing; film; genetics; genomics; metaphor; public; public engagement; science communication; survey

Mesh:

Year:  2018        PMID: 29856292     DOI: 10.2217/pme-2018-0032

Source DB:  PubMed          Journal:  Per Med        ISSN: 1741-0541            Impact factor:   2.512


  13 in total

1.  Evolving public views on the value of one's DNA and expectations for genomic database governance: Results from a national survey.

Authors:  Forrest Briscoe; Ifeoma Ajunwa; Allison Gaddis; Jennifer McCormick
Journal:  PLoS One       Date:  2020-03-11       Impact factor: 3.240

2.  Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia.

Authors:  Richard Milne; Katherine I Morley; Heidi Howard; Emilia Niemiec; Dianne Nicol; Christine Critchley; Barbara Prainsack; Danya Vears; James Smith; Claire Steed; Paul Bevan; Jerome Atutornu; Lauren Farley; Peter Goodhand; Adrian Thorogood; Erika Kleiderman; Anna Middleton
Journal:  Hum Genet       Date:  2019-09-17       Impact factor: 4.132

3.  Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?

Authors:  Anna Middleton; Richard Milne; Mohamed A Almarri; Shamim Anwer; Jerome Atutornu; Elena E Baranova; Paul Bevan; Maria Cerezo; Yali Cong; 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; Nan Wang; 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; Vigdís Stefànsdóttir; Cornelia Tandre; Adrian Thorogood; Torsten H Voigt; Anne V West; Go Yoshizawa; Katherine I Morley
Journal:  Am J Hum Genet       Date:  2020-09-17       Impact factor: 11.025

4.  Attitudes of Costa Rican individuals towards donation of personal genetic data for research.

Authors:  Gabriela Chavarria-Soley; Fernanda Francis-Cartin; Fabiola Jimenez-Gonzalez; Alejandro Ávila-Aguirre; Maria Jose Castro-Gomez; Lauren Robarts; Anna Middleton; Henriette Raventós
Journal:  Per Med       Date:  2021-02-12       Impact factor: 2.512

5.  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

6.  The Global Brain Health Survey: Development of a Multi-Language Survey of Public Views on Brain Health.

Authors:  Isabelle Budin-Ljøsne; Barbara Bodorkos Friedman; Sana Suri; Cristina Solé-Padullés; Sandra Düzel; Christian A Drevon; William F C Baaré; Athanasia Monika Mowinckel; Enikő Zsoldos; Kathrine Skak Madsen; Rebecca Bruu Carver; Paolo Ghisletta; Mari R Arnesen; David Bartrés Faz; Andreas M Brandmaier; Anders Martin Fjell; Aud Kvalbein; Richard N Henson; Rogier A Kievit; Laura Nawijn; Roland Pochet; Alfons Schnitzler; Kristine B Walhovd; Larysa Zasiekina
Journal:  Front Public Health       Date:  2020-08-14

7.  Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data.

Authors:  Anna Middleton; Richard Milne; Heidi Howard; Emilia Niemiec; Lauren Robarts; Christine Critchley; Dianne Nicol; Barbara Prainsack; Jerome Atutornu; Danya F Vears; James Smith; Claire Steed; Paul Bevan; Erick R Scott; Jason Bobe; Peter Goodhand; Erika Kleiderman; Adrian Thorogood; Katherine I Morley
Journal:  Eur J Hum Genet       Date:  2019-11-29       Impact factor: 4.246

8.  DNA Data Marketplace: An Analysis of the Ethical Concerns Regarding the Participation of the Individuals.

Authors:  Eman Ahmed; Mahsa Shabani
Journal:  Front Genet       Date:  2019-11-05       Impact factor: 4.599

9.  Sharing genomic data from clinical testing with researchers: public survey of expectations of clinical genomic data management in Queensland, Australia.

Authors:  Miranda E Vidgen; Sid Kaladharan; Eva Malacova; Cameron Hurst; Nicola Waddell
Journal:  BMC Med Ethics       Date:  2020-11-19       Impact factor: 2.652

10.  Public trust and genomic medicine in Canada and the UK.

Authors:  Sarah Savić-Kallesøe; Anna Middleton; Richard Milne
Journal:  Wellcome Open Res       Date:  2021-07-01
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