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

Middleton, Anna ; Niemiec, Emilia LU orcid ; Prainsack, Barbara ; Bobe, Jason ; Farley, Lauren ; Steed, Claire ; Smith, James ; Bevan, Paul ; Bonhomme, Natasha and Kleiderman, Erika , et al. (2018) In Personalized Medicine 15(4). p.311-318
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... (More)

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.

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publishing date
type
Contribution to journal
publication status
published
subject
keywords
Attitude, Cross-Sectional Studies, Genomics, Humans, Information Dissemination, Internet, Privacy, Public Opinion, Surveys and Questionnaires
in
Personalized Medicine
volume
15
issue
4
pages
8 pages
publisher
Future Science
external identifiers
  • pmid:29856292
  • scopus:85050776133
ISSN
1744-828X
DOI
10.2217/pme-2018-0032
language
English
LU publication?
no
id
a799a13e-e1b3-4391-b58b-c32dc4154e18
date added to LUP
2020-11-17 17:39:06
date last changed
2025-07-25 15:23:03
@article{a799a13e-e1b3-4391-b58b-c32dc4154e18,
  abstract     = {{<p>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.</p>}},
  author       = {{Middleton, Anna and Niemiec, Emilia and Prainsack, Barbara and Bobe, Jason and Farley, Lauren and Steed, Claire and Smith, James and Bevan, Paul and Bonhomme, Natasha and Kleiderman, Erika and Thorogood, Adrian and Schickhardt, Christoph and Garattini, Chiara and Vears, Danya and Littler, Katherine and Banner, Natalie and Scott, Erick and Kovalevskaya, Nadezda V and Levin, Elissa and Morley, Katherine I and Howard, Heidi C}},
  issn         = {{1744-828X}},
  keywords     = {{Attitude; Cross-Sectional Studies; Genomics; Humans; Information Dissemination; Internet; Privacy; Public Opinion; Surveys and Questionnaires}},
  language     = {{eng}},
  month        = {{07}},
  number       = {{4}},
  pages        = {{311--318}},
  publisher    = {{Future Science}},
  series       = {{Personalized Medicine}},
  title        = {{'Your DNA, Your Say' : global survey gathering attitudes toward genomics: design, delivery and methods}},
  url          = {{http://dx.doi.org/10.2217/pme-2018-0032}},
  doi          = {{10.2217/pme-2018-0032}},
  volume       = {{15}},
  year         = {{2018}},
}