IntroductionCesagen researchers involved in working session to draft White Paper on whole genome sequencing
The session was co-chaired by Professor Ruth Chadwick (Chair of the newly launched HUGO Committee on Ethics, Law and Society; HUGO Council Member and Director of Cesagen, Cardiff University); and Don Chalmers, Professor in the Law Faculty, Tasmania University.
The purpose of the meeting was to discuss the draft of the White Paper on whole genome sequencing, prepared by a group convened at the Brocher Foundation, Geneva, following an award from the Foundation to Edison Liu, President of HUGO, and Ruth Chadwick.
Ellen Ellen Wright Clayton Craig-Weaver Professor of Pediatrics and Professor of Law at Vanderbilt University in Nashville, and a member of the writing group, presented the paper. Comments on the draft were provided by experts from different disciplines and countries, including Hub Zwart, Director of the Centre for Society & the Life Sciences (CSG) in Nijmegen; Dr Richard Tutton, Assistant Director Cesagen, Lancaster University, UK; Belinda Bennett, Professor of Health and Medical Law at the University of Sydney; and Benjamin Capps, Assistant Professor and Director of Graduate Studies, Centre for Biomedical Ethics, National University, Singapore (also an co-author of the draft).
The White Paper, which will be subject to a consultation period on the HUGO website, uses the methodology of imagined futures to explore scenarios in which the benefits of whole genome sequencing could be captured for society, while recognising the challenges. Three areas are considered: clinical indications for whole genome sequencing, cancer genomics, microbial genomics and infectious diseases. A lively debate with the audience followed and it was emphasised how important the paper will be for clinicians working in the field of genetic medicine.
THe HUGO website can be found here.