Dr Marthe Smedinga1, Dr Owen Schaefer1, Dr. Tamra Lysaght (moderator)2, Prof. Mark Taylor3
1National University of Singapore , Singapore, 2The University of Sydney, Sydney, Australia, 3The University of Melbourne, Melbourne, Australia
Biography:
Bio to come
Abstract:
A number of jurisdictions, as well as some particular databanks and biobanks, require disbursement of personal data and samples for research purposes to advance the public interest (or cognate terms like public benefit, public good, social value, etc.). Advancement of the public interest plays an important role in ethically justifying the use of data and samples, especially when specific consent for secondary purposes is not obtained. However, the concept is notoriously vague and variably understood.
This panel will gather scholars who have studied the notion of public interest in the context of data and tissue research, to explore the prospect and limitations on making use of a public interest evaluation across different jurisdictions. Key questions to be addressed include whether the concept is fit for purpose, what are the particular contexts in which it can and should be meaningfully deployed, and how the public interest requirement is operationalized in the context of government-funded data platforms.
Planning:
-Introduction by moderator Dr. Tamra Lysaght (University of Sydney)
-7 min. presentation by Prof. Ainsley Newson (University of Sydney): Is the concept of public interest fit for purpose?
-7 min. presentation by Dr. G. Owen Schaefer (National University of Singapore): Why deidentified data-sharing should be in the public interest.
-7 min. presentation by Prof. Mark Taylor (University of Melbourne): Realizing the benefits of medical confidentiality through public interest.
-7 min. presentation by Dr. Marthe Smedinga (National University of Singapore): Applying the public interest criterion in practice.
-30 min. discussion
Presentation Slides PDF – Click here