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

Research output: Contribution to journal › Journal article › Research › peer-review

Standard

'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

Harvard

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, NV, Levin, E, Morley, KI & Howard, HC 2018, ''Your DNA, Your Say': Global survey gathering attitudes toward genomics: Design, delivery and methods', Personalized Medicine, vol. 15, no. 4, pp. 311-318. https://doi.org/10.2217/pme-2018-0032

APA

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., ... Howard, H. C. (2018). 'Your DNA, Your Say': Global survey gathering attitudes toward genomics: Design, delivery and methods. Personalized Medicine, 15(4), 311-318. https://doi.org/10.2217/pme-2018-0032

Vancouver

Middleton A, Niemiec E, Prainsack B, Bobe J, Farley L, Steed C et al. 'Your DNA, Your Say': Global survey gathering attitudes toward genomics: Design, delivery and methods. Personalized Medicine. 2018;15(4):311-318. https://doi.org/10.2217/pme-2018-0032

Author

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. / 'Your DNA, Your Say' : Global survey gathering attitudes toward genomics: Design, delivery and methods. In: Personalized Medicine. 2018 ; Vol. 15, No. 4. pp. 311-318.

Bibtex

@article{6aa27f8ef90148d29e1e425b1511d5c4,
title = "'Your DNA, Your Say': Global survey gathering attitudes toward genomics: Design, delivery and methods",
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.",
keywords = "attitudes, data sharing, film, genetics, genomics, metaphor, public, public engagement, science communication, survey",
author = "Anna Middleton and Emilia Niemiec and Barbara Prainsack and Jason Bobe and Lauren Farley and Claire Steed and James Smith and Paul Bevan and Natasha Bonhomme and Erika Kleiderman and Adrian Thorogood and Christoph Schickhardt and Chiara Garattini and Danya Vears and Katherine Littler and Natalie Banner and Erick Scott and Kovalevskaya, {Nadezda V.} and Elissa Levin and Morley, {Katherine I.} and Howard, {Heidi C.}",
note = "Publisher Copyright: {\textcopyright} 2018 Anna Middleton.",
year = "2018",
doi = "10.2217/pme-2018-0032",
language = "English",
volume = "15",
pages = "311--318",
journal = "Personalized Medicine",
issn = "1741-0541",
publisher = "Future Medicine Ltd.",
number = "4",

}

RIS

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