Seminar with Dr Danya Vears

Storage and sharing of genomic data: Ethical issues and public perspectives

Abstract

Storage and sharing of genomic data following diagnostic sequencing is critical to the future of genomic medicine. Data sharing increases the chance of finding a diagnosis for both current and future patients and can benefit clinical and pharmaceutical research. Yet, the storage and sharing of genomic data raise many ethical and practical challenges. Surprisingly few studies have explored public perspectives on how and where data should be stored, with whom it should be shared, and how to obtain meaningful consent to do so. In this presentation, Dr Danya Vears will discuss these challenges and discuss the results of a focus group study conducted with members of the general public that explored these issues.

Registration 

Please register no later than the 21 June 2022 at 14:00 using this registration form

Bio

Dr. Danya Vears is a social scientist with a genetic counselling background who explores ethical issues relating to genetic testing. She is a Team Leader and Senior Research Fellow at the Biomedical Ethics Research Group, Murdoch Children’s Research Institute and holds honorary positions at University of Melbourne and the Centre for Biomedical Ethics and Law, University of Leuven.