'Your DNA, Your Say': Global survey gathering attitudes toward genomics: Design, delivery and methods
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'Your DNA, Your Say' : Global survey gathering attitudes toward genomics: Design, delivery and methods. / Middleton, Anna; Niemiec, Emilia; Prainsack, Barbara; Bobe, Jason; Farley, Lauren; Steed, Claire; Smith, James; Bevan, Paul; Bonhomme, Natasha; Kleiderman, Erika; Thorogood, Adrian; Schickhardt, Christoph; Garattini, Chiara; Vears, Danya; Littler, Katherine; Banner, Natalie; Scott, Erick; Kovalevskaya, Nadezda V.; Levin, Elissa; Morley, Katherine I.; Howard, Heidi C.
In: Personalized Medicine, Vol. 15, No. 4, 2018, p. 311-318.Research output: Contribution to journal › Journal article › Research › peer-review
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TY - JOUR
T1 - 'Your DNA, Your Say'
T2 - Global survey gathering attitudes toward genomics: Design, delivery and methods
AU - Middleton, Anna
AU - Niemiec, Emilia
AU - Prainsack, Barbara
AU - Bobe, Jason
AU - Farley, Lauren
AU - Steed, Claire
AU - Smith, James
AU - Bevan, Paul
AU - Bonhomme, Natasha
AU - Kleiderman, Erika
AU - Thorogood, Adrian
AU - Schickhardt, Christoph
AU - Garattini, Chiara
AU - Vears, Danya
AU - Littler, Katherine
AU - Banner, Natalie
AU - Scott, Erick
AU - Kovalevskaya, Nadezda V.
AU - Levin, Elissa
AU - Morley, Katherine I.
AU - Howard, Heidi C.
N1 - Publisher Copyright: © 2018 Anna Middleton.
PY - 2018
Y1 - 2018
N2 - 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.
AB - 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.
KW - attitudes
KW - data sharing
KW - film
KW - genetics
KW - genomics
KW - metaphor
KW - public
KW - public engagement
KW - science communication
KW - survey
UR - http://www.scopus.com/inward/record.url?scp=85050776133&partnerID=8YFLogxK
U2 - 10.2217/pme-2018-0032
DO - 10.2217/pme-2018-0032
M3 - Journal article
C2 - 29856292
AN - SCOPUS:85050776133
VL - 15
SP - 311
EP - 318
JO - Personalized Medicine
JF - Personalized Medicine
SN - 1741-0541
IS - 4
ER -
ID: 369541590