Meeting report: Genome ELSI and Dynamic Consent Workshop, Kyoto 2017
Program 4 Workforce, Education and Ethics co-lead Ainsley Newson, Program Manager Tiffany Boughtwood and Program Coordinator Matilda Haas recently represented Australian Genomics at two meetings in Japan; the International Symposium of Genomics and Society Genome ELSI Kyoto 2017 meeting (November 13th-14th) and the Daiwa Anglo-Japanese Foundation Workshop on Establishing International Standards in Dynamic Consent (November 15th-16th).
The Genome ELSI Kyoto 2017 meeting focused on the current challenges in genomics. After a series of over-arching ‘grand challenges’ presentations, a series of sessions addressed more specific issues. These were identified as data sharing and privacy; return of results and incidental findings; informed consent and ethics review, and public trust and engagement. Ainsley led the discussion on return of results and incidental findings, and used the opportunity to share progress on genomics strategy in Australia, including the recently released National Health and Genomics Policy Framework.
The Dynamic Consent Workshop brought together representatives from international initiatives addressing consent using dynamic consent approaches, to share experiences with its strengths and challenges, and to harmonise international expectations regarding where this approach can be used effectively and how it might best be evaluated. Australian Genomics will continue to contribute to this newly established working group by leading an evaluation of dynamic consent through our new Flagship projects.
Our participation in the meetings also serves to strengthen our collaborations in this area and with the Oxford University and Melbourne Law School Centre for Health, Law and Emerging Technologies (HeLEX) team led by Jane Kaye and Harriet Teare; who co-organised the second workshop.