| Literature DB >> 29856292 |
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