EMPAG Scientific Programme
The programme is subject to change.
Saturday, May 21, 2016 | |
| 10:30 - 12:00 | EMPAG/ESHG Educational Session E2: Genetic Privacy and Data Sharing |
E02.1 Identifying Personal Genomes by Surname Inference Yaniv Erlich, US E02.2 The role of policy in navigating the privacy landscape and promoting responsible genomic data sharing Edward Dove, UK | |
| 14:00 - 14:30 | Opening: joint with ESHG Welcome addresses |
14:30 - 16:00 | EMPAG Plenary Session 1: The evolution of Genetic Counseling |
EPL1.1 Data sharing to support UK clinical genetics and genomics services Sobia Raza, A. Hall, C. Rands, S. Deans, D. McMullan, M. Kroese; EPL1.2 Landscape of genetic tests worldwide: a report from the NIH Genetic Testing Registry (GTR) Adriana J. Malheiro, B.L. Kattman, B. Gu, V. Hem, K.S. Katz, M. Ovetsky, R. Villamarin-Salomon, G. Song, C. Wallin, D.R. Maglott, J.M. Lee, W.S. Rubinstein; EPL1.3 Informing clinical implementation of genomics by “doing” - Practitioner perspectives on integrating genomics in their practice Melissa Martyn, E. Forbes, A. Kanga-Parabia, I. Macciocca, S. Metcalfe, L. Keogh, E. Lynch, the Melbourne Genomics Health Alliance, C. Gaff; EPL1.4 Genetic Counsellor training in the Genomics Era: The development of a new training scheme in England Michelle Bishop, C. Benjamin, L. Boyes, G. Hall, R. Macleod, M. McAllister, A. Middleton, C. Patch, N. Latham, A. Seller, V. Davison, S. Hill; EPL1.5 Ensuring patient centred care in genomics - patients’ experiences of the Melbourne Genomic Health Alliance demonstration project Elly L. Lynch, M. Martyn, I. Macciocca, S. Metcalfe, N. Mupfeki, E. Forbes, E. Creed, G. Brett, E. Wilkins, D. Bradford, A. Sexton, L. Keogh, L. di Pietro, Melbourne Genomics Community Advisory Group, Melbourne Genomics Health Alliance, C. Gaff; EPL1.6 Evolving genetic counselling practice in bicultural New Zealand, a case study of CDH1 testing in a large Maori whanau (family) Kimberley K. Gamet; | |
| 16:00 - 16:30 | Coffee break |
16.30 - 18:00 | EMPAG Symposium ESY1: "Diversity" |
ESY1.1 Introductions to speakers & objective of the session Nadeem Qureshi ESY1.2 Reducing inequalities in the USA: implementation of NHGRI’s genomics research programs in clinical medicine Vence Bonham ESY1.3 Experience from Melbourne Genomics Health Alliance to improve access for underserved population Elly Lynch; Sylvia Metcalfe ESY1.4 How is Genomics England talking inequalities? Michael Parker; Julian Barwell Round table discussion with Q&A session | |
| 18:00 - 18:30 | Coffee break |
| 18.30 - 20:00 | EMPAG/ESHG Joint Concurrent Session C06: Carrier and Newborn Screening |
C06.1 Responsible implementation of expanded carrier screening - Recommendations of the European Society of Human Genetics L. Henneman, P. Borry, D. Chokoshvili, M.C. Cornel, C.G. Van El, F. Forzano, A. Hall, H.C. Howard, S. Janssens, H. Kayserili, P. Lakeman, A. Lucassen, S.A. Metcalfe, L. Vidmar, G. De Wert, W.J. Dondorp, Borut Peterlin; C06.2 Setting the scope of screening: ethical reflections on the offer of reproductive choice Greg Stapleton; C06.3 Factors for successful implementation of population-based expanded carrier screening: what can we learn from existing initiatives? Kim C.A. Holtkamp, I.B. Mathijssen, P. Lakeman, M.C. Van Maarle, W.J. Dondorp, L. Henneman, M.C. Cornel; C06.4 Advantages of expanded universal carrier screening: What is at stake? Sanne van der Hout, K. Holtkamp, L. Henneman, G. De Wert, W. Dondorp; C06.5 Clinical utility of expanded carrier screening: reproductive behaviors of at-risk couples C. Ghiossi, K. Ready, C. Lieber, J.D. Goldberg, I.S. Haque, Gabriel A. Lazarin, K.K. Wong; C06.6 Genetic counseling in an oocyte donation program: knowledge, satisfaction and psychological impact of the expanded carrier screening. Josep Pla, E. Clua, M. Boada, B. Coroleu, P.N. Barri, A. Veiga, X. Estivill, G. Lasheras, A. Abulí; | |
20:00 - 21:30 | Networking Mixer at the CCIB (conference venue) |
Sunday, May 22, 2016 | |
| 08:30 - 10:00 | EMPAG/ESHG joint Symposium S01: The future lies in uncertainty |
S01.1 Public understanding of risk/ how to interpret big data Anneke Lucassen, United Kingdom S01.2 Receiving personal genomic services: consumer’s perspective Scott Roberts, United States S01.3 The blessings of uncertainty in the genomics era Aad Tibben, The Netherlands | |
| 10:00 - 10:15 | Coffee Break, Free Poster Viewing, Exhibition |
| 10:15 - 11:15 | Poster Viewing with Authors (Group A) |
| 11:15 - 12:45 | EMPAG Educational Session EE1: DTC genetic testing revisited: empowering patients – caring for consumers? |
EES.1 Shifting roles and relationships: the impact of direct-to-consumer genetic testing on healthcare delivery E. Gordon; EES.2 The “activated patient”: A fresh look at empowerment B. Prainsack; EES.3 Closing the Gap? Heidi Howard; | |
| 12:15 - 13:00 | Break |
| 13:00 - 14:30 | EMPAG/ESHG Joint Concurrent Session C09: Prenatal Decision Making |
C09.1 Introduction of non-invasive prenatal testing as a first-tier screening test: A survey among Dutch midwives about their role as counselors L. Martin, J. Gitsels-van der Wal, Lidewij Henneman; C09.2 Should we be worried about children born after PGD for Huntington’s Disease? Mariska den Heijer, A. Tibben, G. de Wert, W. Dondorp, M. van der Sangen, C. de Die; C09.3 Informed choice in prenatal genetic testing: the choice between non-invasive and invasive prenatal testing Sanne L. van der Steen, K.E.M. Diderich, I.M. Bakkeren, M.M.F.C. Knapen, A.T.J.I. Go, A. Tibben, M.I. Srebniak, D. Van Opstal, M.G. Polak, R.J.H. Galjaard, S.R. Riedijk; C09.4 Attitudes, decision-making and experiences of preimplantation genetic diagnosis (PGD) users Shachar Zuckerman, S. Gooldin, G. Altarescu; C09.5 What do pregnant women think of prenatal whole-exome sequencing? A cross-cultural comparison Camilla Richards, S. Dheensa, A. Newson, Z. Deans, S. Shkedi-Rafid, J. Hyett, Z. Richmond, A. Fenwick; C09.6 Why do pregnant women accept or decline prenatal diagnosis for Down syndrome? Charlotta Ingvoldstad, E. Ternby, O. Axelsson, G. Annerén, P. Lindgren; | |
| 14:30 - 15:00 | Vitamin Break |
| 15:00 - 16:30 | EMPAG Workshop: Getting personal: Beyond the genetic test result |
Speakers: Gerrit van Putten and Lara Ras Sequencing techniques are generating huge amounts of data. Each significant result has an impact on a person, a family and perhaps even a generation. Lara was confronted with a tough decision about her pregnancy at 23 weeks gestation. Gerrit was told all his life that he did not need to worry about the Huntington’s disease in his family, but he chose to engage in predictive testing. In this session Lara and Gerrit are willing to share their experience with genetic testing and be interviewed by the audience. This session is intended as a bridge between those who develop and use ever more advanced techniques and those receiving the results. | |
| 16:30 - 16:45 | Coffee Break, Free Poster Viewing, Exhibition |
| 16:45 - 17:45 | Poster Viewing with Authors (Group B) |
| 17:45 - 19:15 | EMPAG Plenary Session 2: The Implication for Families of Various Genetic Diseases |
EPL2.1 Feedback on professional experiences on the disclosure of genetic information to family members in France Sandrine de Montgolfier, E. Rial-Sebbag, D. d’Audiffret, C. Farnos, B. Derbez, A. de Pauw, F. Galacteros, D. Stoppa-Lyonnet; EPL2.2 Co-designing an intervention to facilitate family communication about inherited genetic conditions (IGC). Alison Metcalfe, E. Rowland, I. Eisler, M. Ellison, F. Flinter, J. Grey, S. Hutchison, C. Jackson, L. Longworth, R. MacLeod, M. McAllister, T. Murrells, C. Patch, G. Robert, F. Ulph; EPL2.3 CANCELLED Holly Etchegary, K.A. Hodgkinson; EPL2.4 Twenty years’ experience conducting presymptomatic testing for late-onset neurological diseases: what have we learned? M. Paneque, J. Félix, Á. Méndes, C. Lemos, S. Lêdo, J. Silva, Jorge Sequeiros; EPL2.5 Predictive testing for Huntington’s disease under the age of 18 years in the UK 1993-2014. Oliver W.J. Oliver, R.C. Cann, A. Clarke, C. Compton, A. Fryer, S. Jenkins, N. Lahiri, R. MacLeod, Z. Miedzybrodzka, P.J. Morrison, H. Musgrave, M. O'Driscoll; EPL2.6 ‘I’ve had to fight for everything’: a qualitative study exploring the experiences of support of young people with juvenile Huntington’s Disease, and their parents, in England. Penny Curtis, O. Quarrell, R. Cann, H. Santini; | |
Monday, May 23, 2016 | |
| 08:30 - 10:00 | EMPAG/ESHG/ASHG Symposium S09. Debating germline genome editing |
S09.1 Technical opportunities of genome editing Robin Lovell-Badge, UK S09.2 Clinical aspects of germline gene editing Kiran Musunuru, US S09.3 Ethical aspect of germline gene editing Annelien Bredenoord, NL S09.4 ASHG statement on germline genome editing Kelly Ormond, US | |
| 10:00 - 10:15 | Coffee break |
| 10:15 - 11:15 | Poster Viewing with Authors (Group C) |
| 11:15 - 12:45 | EMPAG Plenary Session 3: Incidental Findings and Consent |
EPL3.1 Development of a shared clinical exome sequencing consent form across multiple organisations Ivan Macciocca, Z. Stark, D. Bruno, J. Taylor, S.M. White, T.Y. Tan, G.R. Brett, E. Creed, E. Lynch, C. Community Advisory Group, A. Januszewicz, C. Gaff; EPL3.2 Genomic investigations and incidental findings:the time for broad consent Gillian Crawford, A. Fenwick, A. Lucassen; EPL3.3 Outcomes of a Randomized Controlled Trial of Consent Models for Genome Sequencing Barbara B. Biesecker, P. Chrysostomou, H. Peay, L. Nelson; EPL3.4 The UK 100,000 genomes project: views, expectations, and experiences of the first patients recruited Sandi Dheensa, A. Lucassen, A. Fenwick, G. Crawford; EPL3.5 Diagnostic whole exome sequencing in pediatrics: Comparing parents’ pre- and post-disclosure attitudes toward return of results Candice Cornelis*, A. Tibben, W. Dondorp, M. van Haelst, A. Bredenoord, N. Knoers, M. Düwell, I. Bolt, M. van Summeren; EPL3.6 Who is my family’s keeper? Professional and family ethics in the era of unsolicited findings Roel H.P. Wouters, E.E. Voest, R.M. Bijlsma, M.G.E.M. Ausems, J.J.M. van Delden, A.L. Bredenoord; | |
| 12:55 - 13:00 | Break |
| 13:00 - 14:30 | EMPAG Plenary Session 4: Reporting the Results: Clinical and Ethical Considerations |
EPL4.1 When children become adults: should biobanks re-contact? Noor A.A. Giesbertz*, A.L. Bredenoord, J.J.M. van Delden; EPL4.2 Re-contact in clinical practice: investigating the perspectives of healthcare professionals in the United Kingdom Daniele Carrieri, S. Dheensa, S. Doheny, P.D. Turnpenny, A.J. Clarke, A.M. Lucassen, S.E. Kelly; EPL4.3 Incidental findings derived from Next-Generation sequencing: what does actionable in childhood really mean? A. Laberge, Julie Richer; EPL4.4 Autonomy in the genomics era Ainsley J. Newson; EPL4.5 An exploration of reporting practices for next generation sequencing technologies with laboratory personnel Danya F. Vears*, K. Sénécal, P. Borry; EPL4.6 Informing preparation for personal genomic screening Jane Fleming, B. Terrill, M. Dziadek, E. Kirk, A. Roscioli, K. Barlow-Stewart; | |
| 14:30 - 15:00 | Vitamin break |
| 15:00 - 16:30 | EMPAG Plenary Session 5: From Public Understanding to Educating Professionals |
EPL5.1 Socialising the Genome Anna Middleton, J. Borra, K. Nevin-Ridley, V. Parry, A. Sanders, J. Rayner; EPL5.2 General public’s attitudes towards genetics and genetic testing Davit Chokoshvili*, C. Belmans, R. Poncelet, S. Sanders, D. Vaes, I. Huys, P. Borry; EPL5.3 Exploring Australian public knowledge and understanding of genetic concepts and terminology in the era of personal genomics Sylvia A. Metcalfe, B. Terrill, C. Hickerton, J. Savard, E. Turbitt, A. Newson, C. Gaff, K. Gray, A. Middleton, B. Wilson; EPL5.4 Development of Test Ordering Recommendations for Clinicians with Minimal Genetics Background from the ClinGen Consortium Consent and Disclosure Recommendations (CADRe) Committee Kelly E. Ormond, M. Hallquist, A. Buchanan, M. Cho, K. Brothers, C.R. Coughlin II, L. Hercher, L. Hudgins, S. Jamal, H. Levy, H. Peay, M. Roche, M. Stosic, M. Smith, W. Uhlmann, K. Wain, W.A. Faucett; EPL5.5 E-learning to improve communication about cancer family history and knowledge on hereditary colorectal cancer by non-genetic health professionals Kirsten F.L. Douma, E.M.A. Smets, E. Dekker, P.J. Tanis, C.M. Aalfs; EPL5.6 Onco-equip: Preparing healthcare professionals in cancer care for routine genetic testing. Leigh M. Jackson*, H. Skirton; | |
| 16:30 - 16:45 | Coffee Break |
| 16:45 - 17:45 | Poster Viewing with Authors (Group D) |
| 17:45 - 19:15 | EMPAG Plenary Session 6: Helicopter View On Cancer Genetics |
EPL6.1 Genetic Counselling Preferences and Psychological Impact of the Analysis by Next-Generation-Sequencing in Clinical Oncology (PIANO study) Irene Esteban, F. Balaguer, E. Adrover, E. Carrasco, N. Gadea, M. Vilaró, G. Llort, R. Jovert, M. Herráiz, S. Kohrrami, A. Herreros de Tejada, R. Morales, J. Cano, R. Serrano, B. Graña, C. Guillén, J. Alés, J. Brunet, J. Balmaña; EPL6.2 The impact of predictive genetic testing for cancer on young adults Lea Godino, D. Turchetti, L. Jackson, C. Hennessy, H. Skirton; EPL6.3 How to approach all high risk members in known Lynch Syndrome families? Experiences of different contact methods and perceived challenges in passing the information to family members in Finland Katja I. Aktan-Collan, A. Haukkala, E. Kolttola, J. Mecklin, K. Pylvanainen, H. Kääriäinen; EPL6.4 Increasing awareness of lifestyle recommendations for cancer prevention among Lynch syndrome mutation carriers: results of a randomized controlled trial A. Visser, A. Vrieling, M. Hoedjes, E. Kampman, Nicoline Hoogerbrugge; EPL6.5 Group-based patient education (GPE) courses for hereditary breast and ovarian cancer Wenche Listøl, H. Høberg-Vetti, G. Eide, C. Bjorvatn;
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| 20:00 | Networking party |
Tuesday, May 24, 2016 | |
| 09:00 - 10:30 | EMPAG Plenary Session 7: Breaking News |
EPL7.1 Development of new resources to improve communication in genetic counselling practice Marina Álvarez Estapé, I. Cuscó, L. Pérez-Jurado, C. Serra-Juhé; EPL7.2 What determines decision making in preconception carrier screening and can it be influenced with message framing and narrative information? Jan S. Voorwinden, A.H. Buitenhuis, E. Birnie, A.M. Lucassen, M.A. Verkerk, I.M. van Langen, M. Plantinga, A.V. Ranchor; EPL7.3 Transparency in the marketing of direct-to-consumer genetic tests Jacqueline A. Hall, J.E. Amato, C. Pagliari; EPL7.4 Genomic Newborn Screening: Public Health Policy Considerations and Recommendations Martina C. Cornel, J.M. Friedman, A.J. Goldenberg, K.J. Lister, K. Sénécal, D.F. Vears, the Global Alliance for Genomics and Health Regulatory and Ethics Working Group Paediatric Task Team; EPL7.5 Cancer genetic counselling based on electronic mega-pedigrees incorporating Cancer Registry information Vigdís Stefansdottir, O.T. Johannsson, H. Skirton, L. Tryggvadottir, J.J. Jonsson; EPL7.6 Genetic testing for osteogenesis imperfecta on children suspected of abuse: does testing put parents at greater risk? Emily Youngblom*, D.J. Bowen, P.H. Byers, P. Pecora, L. Kelly; | |
| 10:30 - 11:00 | Coffee Break |
| 11:00 - 12:30 | EMPAG/ESHG Joint Concurrent Session C20: Gene Editing: To Fear or to Cheer? |
C20.1 Introduction by the Chair C20.2 Regulating Genome Editing Technologies: Loopholes, rabbit wholes and the search for consistency Rosario Isasi; C20.3 Are biomedical research fundamental principles appropriate for using genome editing in humans? Emmanuelle Rial-Sebbag, A. Cambon-Thomsen; C20.4 One small edit for man, one large edit for mankind? Points to consider for a responsible way forward with gene editing Heidi C. Howard, G. de Wert, C.G. van El, F. Forzano, D. Radojkovic, E. Rial-Sebbag, M.C. Cornel, on behalf of the Public and Professional Policy Committee of the European Society of Human Genetics; C20.5 Ethical issues of gene editing: what does popular media report? Emilia Niemiec*, B.M. Zimmermann, H.C. Howard; C20.6 Optimising CRISPR genome editing using machine learning Riley Doyle; | |
| 12:30 | End of EMPAG meeting |