Data Sharing and Participation: Your DNA, Your Say

Overview of the Your DNA Your Say project for the journal New Bioethics special issue on "Personalised Medicine: The Promies, the Hype and the Pitfalls”
18th May 2017

Excerpt from the article:

"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."

Citation:

Middleton A (2017). Data Sharing and Participation: Your DNA, Your Say. The New Bioethics, vol. 23, issue 1, pp 74-80