Your DNA, Your Say

The New Bioethics : a Multidisciplinary Journal of Biotechnology and the Body
Anna Middleton

Abstract

Genomic and medical data sharing is pivotal if the promise of genomic medicine is to be fully realised. Social scientists working in the genomics arena ask the public 'how is the technology working for you?' Empirical studies on attitudes, values and beliefs are incredibly valuable; they offer a voice from those who are, or will be, directly affected. This is paramount if personalised medicine is to be truly personal. An International attitude study, Your DNA, Your Say, uses film to provide background information and an online survey to gather public views on donating one's own personal DNA and medical data for use by others. In this paper the rationale to the project is introduced together with an overview of the survey and film design. The project has been translated into multiple languages and the results will be used in policy for the Global Alliance for Genomics and Health.

References

Jan 24, 2013·Briefings in Bioinformatics·Stephan PabingerZlatko Trajanoski
Nov 28, 2013·Experimental Dermatology·Takuya TakeichiJohn A McGrath
Apr 24, 2014·European Journal of Human Genetics : EJHG·Tim De Meyer, Dan T A Eisenberg
Oct 23, 2014·European Journal of Human Genetics : EJHG·John R BurnettRobert A Hegele
Jan 20, 2015·Critical Reviews in Clinical Laboratory Sciences·Maritha J KotzeJohann W Schneider
Jul 30, 2015·Human Mutation·Eleni A ChatzimichaliGanesh J Swaminathan
Oct 24, 2015·Drug Discovery Today·Ultan McDermott
Jul 9, 2016·Genomics·Tony L Brown, Theresa M Meloche
Dec 3, 2016·Nucleic Acids Research·Konrad J KarczewskiDaniel G MacArthur
Apr 27, 2017·Lancet·Vivienne Parry, Anna Middleton

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Citations

Dec 21, 2017·F1000Research·Jonathan Roberts, Anna Middleton
Feb 3, 2018·F1000Research·Jonathan Roberts, Anna Middleton
Dec 1, 2019·European Journal of Human Genetics : EJHG·Anna MiddletonUNKNOWN Participant Values Work Stream of the Global Alliance for Genomics and Health
Jan 9, 2020·Journal of Medical Ethics·Angela Ballantyne
Feb 13, 2021·Personalized Medicine·Gabriela Chavarria-SoleyHenriette Raventós

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