Public perspectives on the donation and sharing of genomic and health information: findings of a global study

Richard gave this talk to during the webinar series "Digital Health", a part of the 4th annual meeting of the ÖPPM, Österreichische Plattform Für Personalisierte Meizin in Austria
24th November 2020

Event description (from the event website):

The 4th Annual Meeting of the ÖPPM 2020 will be guided by the main topic “Digitalization in Personalized Medicine”. For obvious reasons, this year’s conference will be held online and we kindly invite you to join us and actively engage in our interactive program. A string of webinars will build the backbone featuring international and national keynotes on societal and technological aspects. Moderated discussions following the lectures will pose ample opportunity for a digital dialogue and allow the generation of sustainable ressources for our webpage. With the “ÖPPM Poster Challenge 2020” we invite students in e-health and IT related areas to share insights into relevant aspects of their work in context of Personalized Medicine.

To continue the tradition of a public ÖPPM event part, we will publish a video series of expert statements with ÖPPM members (language: German) and will roll out our new e-learning tool entitled “Personalisierte Medizin – Medizin der Zukunft?”. This online tool was designed and developed in a collaboration of Open Science – Life Science in Dialogue with the ÖPPM to address particularly high school students, but also other interested parties such as patients or their relatives.

Talk synopsis (from the event website):

In this talk, I discuss the importance of public and patient perspectives in the development of genomic medicine, and present the findings of the Your DNA, Your Say study. Your DNA, Your Say is a survey of public attitudes towards the donation and sharing of genomic and health data, including 37,000 responses in 15 languages across 22 countries. I present the findings of the study in relation to people’s willingness to donate data about them for clinical and research use, and examine how this is influenced by their familiarity with genetics, their views of genetic information and their trust in those responsible for collecting and managing data.

About me:
Dr. Richard Milne (Wellcome Genome Campus)
I am a social scientist based in the Society and Ethics Research group at the Wellcome Genome Campus, where I lead on the analysis of the Your DNA, Your Say study, and conduct research on social and ethical questions associated with the collection and use of biodata, and the development of tools for the early detection of common disease. I also co-lead work on Ethical, Legal and Social Implications within the University of Cambridge Public Health initiative.

The talk and the discussion are chaired by Univ. Mag.a Barbara Prainsack (Department of Political Science, Vienna, Austria)



Milne R (2020) Public perspectives on the donation and sharing of genomic and health information: findings of a global study. Part of the Digital Health webinar series, 24th November,  4th annual meeting of the ÖPPM (Österreichische Plattform Für Personalisierte Meizin in Austria), online