NOTE: Provisional programme (30 th August version) to be finalised COST Action IS1303 (CHIPME) Annual Workshop Leuven, September 6-8, 2016 Who has the right to my genome? ELSI challenges of citizen participation and public private partnerships in genomics Venue: Maria-Theresiacollege (MTC) - Sint-Michielsstraat 6-3000 Leuven, Belgium Overview of Annual Workshop This workshop aims to critically examine emerging ethical, legal and social responses to current developments in genomics within Europe and beyond, including key questions such as: What are the ethical and justice-based challenges of private initiatives in genomic testing and public health research, with regard to its implementations in developed and developing countries? Does the commercial use of one s genetic or health data raise specific concerns, for example regarding equity, fairness and social solidarity? As health and genetic data sharing across Europe grows, what are the benefits and pitfalls of these developments, with regard to individual privacy, consent, and regulatory burden? What is the significance of the changing relation of citizens to their individual genomic and health information, especially with regard to the development of participant-centred initiatives and the increasing sharing of genomic and health information by private citizens? Will ICT really offer substantially different new possibilities of public engagement and participation? At a glance The first day of the workshop will begin with CHIPME meetings, followed by presentations by our Short Term Scientific Mission researchers, and as well as a discussion panel on regional and professional developments and challenges in genomics. The second day of the workshop will be dedicated to a series of talks from international speakers and CHIPME members on key areas of concern to CHIPME, including developing country genomics, genetic discrimination, responsible innovation, public-private partnerships, and data sharing in Europe. The third day will be dedicated to a shared session of presentations between CHIPME and the Alumni of the KU Leuven Masters in Bioethics (including many CHIPME members). Throughout the three days, there will be many occasions for formal discussions and informal chats in the beautiful city of Leuven during the highlight CHIPME event of the year. Main contacts: For any queries relating to the event itself, please contact Dr Oliver Feeney (NUI Galway) [feeney.oli@gmail.com] or Local Organiser Professor Pascal Borry (KU Leuven) [pascal.borry@kuleuven.be]. For all queries relating to reimbursements, please contact CHIPME Grant Manager, Ms Martha Shaughnessy [martha.shaughnessy@nuigalway.ie]
Day 1 Tuesday 6th September 2016 DEVELOPING THE AGENDA FOR THE FUTURE 09:00-10:00: CHIPME Management Committee meeting [CHIPME Members only] 10.00 11.00: Presentation and discussion of final CHIPME deliverable Rainbow paper & special issue of Journal of Community Genetics 11:00 11:30: Coffee 11:30-13:00: Working Group meetings [CHIPME Members only] Rooms: MTC3 00.15 MTC1 00.07 MTC1 00.16 13:00 14:00: Lunch 14:00 15:00: Working Group meetings [CHIPME Members only] Rooms: MTC3 00.15 MTC1 00.07 MTC1 00.16 15:00 15:30: Coffee NETWORKING RESEARCHERS & THEIR RESEARCH 15:30-16:30: Short Term Scientific Missions Presentations 16:30 18:00: Discussion panel on regional and professional developments and challenges in genomics: Interactive, conversational discussion between panellists and audience members revolving around six important questions. Panellists include Jane Kaye and Iñigo de Miguel Beriain. 18:00: Close of day 1
Day 2 Wednesday 7th September 2016 KEY ISSUES IN GENOMICS, RESEARCH AND PUBLIC HEALTH 09:00 09:15: Overview of the day and welcome to the speakers. 09:15 09:45: Jennifer Fishman (McGill University, Canada) The rhetoric of 'personalized' and 'precision' genomic medicine in the U.S. context: A critical perspective 09:45 10:15: Michelle McGowan (Cincinnati Children s Hospital Medical Center and University of Cincinnati, USA) The Politics, Ethos, and Ironies of Private and Public Participant-Centric Genomic Research Initiatives in the US. 10:15 10:45: Discussion 10:45 11:15: Coffee 11:15 11:45: Maimuna Mendy (Laboratory Services and Bio bank Group, Office of the Director, IARC, France) The potential and challenges in developing Biobanking infrastructure for research in Low-and Middle-Income countries 11:45 12:15: Angeliki Kerasidou (Malaria Genomics Epidemiology Network (MalariaGEN), Oxford University, UK) Ethical issues of data-sharing in collaborative genomics research 12:15 12:45: Discussion 12:45 13:45: Sandwich Lunch 13:45 14:15: Aisling De Paor (Dublin City University, Ireland) Genetic discrimination and access to the genome
14:45 15:15: Ine Van Hoyweghen (KU Leuven, Belgium) Postgenomic Solidarity. European Life Insurance in the Era of Personalised Medicine 15:15 15:45: Discussion 15:45 16:15: Coffee 16:15 17:00: TBC 17:00 17.30 Thomas Ruddy & Michele Loi (MIDATA) MIDATA - a model of citizen-led data sharing for Europe 17:30 17.50: Discussion 17.50 18:00: Reflections and close 20:00: Belgian dinner Location: Holy Spirit College Naamsestraat 40 3000 Leuven Day 3 Thursday 8th September 2016 09:00-11:30: CHIPME- Leuven MA Bioethics Alumni co-organised event 9:00-9:15: Welcome (Heike Felzmann, Chair of the COST CHIP ME Action & Pascal Borry, University of Leuven) 9:15-9:30: Patrick Miqueu, alumnus edition 2013-2014 (France), When Tumor Genomic Profiling leads to Clinical Trial Participation 9:30-9:45: Mahsa Shabani, alumnus edition 2011-2012 (Iran), Challenges and opportunities of data sharing in genomics 9:45-10:00: Emilia Niemiec, alumnus edition 2013-2014 (Poland), Ethical issues in consumer genomics companies 10:00-10:15: Louiza Kalokairinou, alumnus edition 2012-2013 (Greece), Legislation of direct-to-consumer genetic testing in Europe: a fragmented regulatory landscape
10:15-10:30: Davit Chokoshvili, alumnus edition 2012-2013 (Georgia), General public's attitudes towards genetics and genetic testing 10:30-10:45: Nathalie Moray, alumnus edition 2015-2016 (Belgium), Recreational genomics: from ancestry testing to paternity testing 10:45-11:00: Heidi Howard, alumnus edition 2007-2008 (Canada), Gene editing (to be confirmed) 11.30 12.30: Geniaal Exhibition: exhibition on human genetics and cartoons (with drinks & sandwiches) Location: University Halls Naamsestraat 22-3000 Leuven 12:30: End of CHIPME event EACME conference starts University Halls Naamsestraat 22-3000 Leuven