Back to Search Start Over

'Your DNA, Your Say':Global survey gathering attitudes toward genomics: Design, delivery and methods

Authors :
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.
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.
Source :
Middleton , A , Niemiec , E , Prainsack , B , Bobe , J , Farley , L , Steed , C , Smith , J , Bevan , P , Bonhomme , N , Kleiderman , E , Thorogood , A , Schickhardt , C , Garattini , C , Vears , D , Littler , K , Banner , N , Scott , E , Kovalevskaya , N V , Levin , E , Morley , K I & Howard , H C 2018 , ' 'Your DNA, Your Say' : Global survey gathering attitudes toward genomics: Design, delivery and methods ' , Personalized Medicine , vol. 15 , no. 4 , pp. 311-318 .
Publication Year :
2018

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.

Details

Database :
OAIster
Journal :
Middleton , A , Niemiec , E , Prainsack , B , Bobe , J , Farley , L , Steed , C , Smith , J , Bevan , P , Bonhomme , N , Kleiderman , E , Thorogood , A , Schickhardt , C , Garattini , C , Vears , D , Littler , K , Banner , N , Scott , E , Kovalevskaya , N V , Levin , E , Morley , K I & Howard , H C 2018 , ' 'Your DNA, Your Say' : Global survey gathering attitudes toward genomics: Design, delivery and methods ' , Personalized Medicine , vol. 15 , no. 4 , pp. 311-318 .
Notes :
English
Publication Type :
Electronic Resource
Accession number :
edsoai.on1439548829
Document Type :
Electronic Resource