‘Your DNA, Your Say’: global survey gathering attitudes toward genomics: design, delivery and methods-Reference-Cited by-同舟云学术

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

Published:2018-07-01 Issue:4 Volume:15 Page:311-318
ISSN:1741-0541
Container-title:Personalized Medicine
language:en
Short-container-title:Personalized Medicine

Author:

Middleton Anna¹²,Niemiec Emilia³,Prainsack Barbara⁴,Bobe Jason⁵,Farley Lauren¹,Steed Claire⁶,Smith James⁶,Bevan Paul⁶,Bonhomme Natasha⁷,Kleiderman Erika⁸,Thorogood Adrian⁸,Schickhardt Christoph⁹,Garattini Chiara¹⁰,Vears Danya¹¹,Littler Katherine¹²,Banner Natalie¹²,Scott Erick⁵,Kovalevskaya Nadezda V¹³,Levin Elissa¹⁴,Morley Katherine I¹¹⁵¹⁶,Howard Heidi C¹³

Affiliation:

1. Society & Ethics Research, Connecting Science, Wellcome Genome Campus, Cambridge, UK

2. Faculty of Education, University of Cambridge, Cambridge, UK

3. Centre for Research Ethics & Bioethics, Uppsala University, Uppsala, Sweden

4. Department of Global Health & Social Medicine, King’s College London, London, UK

5. Department of Genetics & Genomic Sciences, Icahn Institute, Icahn School of Medicine at Mount Sinai, NY 10029, USA

6. Web Team, Wellcome Sanger Institute, Wellcome Genome Campus, Cambridge, UK

7. Expecting Health, Genetic Alliance, Washington, DC 20008-2369, USA

8. Centre of Genomics & Policy, McGill University, Montreal, Quebec, Canada

9. Department of Medical Oncology, National Center for Tumor Diseases, Heidelberg University Hospital, Heidelberg, Germany

10. Health & Life Sciences, Intel Corporation, Swindon, UK

11. Department of Public Health & Primary Care, Centre for Biomedical Ethics & Law, KU Leuven, Leuven, Belgium

12. Policy Team, Wellcome, London, UK

13. Repositive Ltd, 104 Hills Road, Cambridge, UK

14. Policy & Clinical Affairs, Helix OpCo LLC, San Francisco, CA 94158, USA

15. National Addiction Centre, Institute of Psychiatry, Psychology & Neuroscience, King’s College London, London, UK

16. Centre for Epidemiology & Biostatistics, Melbourne School of Global & Population Health, The University of Melbourne, Melbourne, Australia

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.

Publisher

Future Medicine Ltd

Subject

Pharmacology,Molecular Medicine,General Medicine

Link

https://www.futuremedicine.com/doi/pdf/10.2217/pme-2018-0032

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