EMPAG Programme 2018-06-17T10:35:59+00:00

Saturday, June 16, 2018

12:30- 13:30 hrs | EBPL 1 – Hopes and expectations on genome editing

Chair: Sam Riedijk, Christophe Cordier

The ethics of clinical applications of germline genome modification:a systematic review of reasons
Ivy van Dijke
Amsterdam, NL

Enabling informed opinions about germline editing among the general public: a pilot study
Boy Vijlbrief
Rotterdam, NL

Informed consent in a human germline gene editing study – ethical issues
Emilia Niemiec
Uppsala, SE

The PRISM-IMPACT study: What are the hopes and expectations of families and health care professionals enrolling in a personalised medicine trial for high risk childhood cancers?
Janine Vetsch
Sydney, Australia

14:00 – 14:30 hrs | Opening – Welcoming Addresses

joint with ESHG

14:30 – 16:00 hrs | EPL1 – Ensuring good clinical practice in whole genome sequencing 

Chair: Nadeem Qureshi, Ramona Moldovan

Knowledge about and attitudes towards whole-genome sequencing among participants in the 100,000 Genomes Project: a multi-site survey
Saskia Sanderson
London, UK

A clinician survey: diagnostic utility, impact on patient management, and outcomes of clinical exome sequencing
Jane Juusola
Gaithersburg, US

Motivations and Barriers for participants and decliners of the 100,000 Genomes Project from different ethnic backgrounds
Nilotpal Chauhan
Oxford, UK

Patient perspectives after genomic sequencing testing in clinical care
Melissa Martyn
Parkville, AU

Reproductive and heteronormative presumptions in disclosure of pediatric whole exome sequencing results
Allison Werner-Lin
Philadelphia, US

Facilitating understanding of whole genome sequencing in young people
Celine Lewis
London, UK

16:00 – 16:30 hrs | Fruit Break, Exhibition, Poster Viewing

16:30 – 18:00 hrs | EPL2 – Improving communication in genetic counselling

Chair: Elisabetta Razzaboni, Milena Paneque Herrera

‘Music of Life’ a new metaphor for genomics, delivered as film within genetic counselling
Anna Middleton
Cambridge, UK

A large outcome study on genetic counseling in the Netherlands: empowerment and emotional functioning
Jan Voorwinden
Groningen, NL

Improving communication for individuals with a rare condition
Ashleen Crowe
Belfast, UK

Empowering service users: Assessing the potential benefits of psychiatric genetic counselling from the 1st UK pilot study.
Melanie Watson
Southampton, UK

Bridging the gaps of uncertainty in genetic counselling with ethnic-specific data.
Yasmin Bylstra
Singapore, Singapore

myKinMatters: developing a web app tool to help patients create a family tree and communicate genetic health information to at-risk relatives
Lisa Ballard
Southampton, UK

18:00 – 18:30 hrs | Coffee Break, Exhibition, Poster Viewing

18:30 – 20:00 hrs | EPL3 – Educating Professionals And Public

Chair: Christophe Cordier, Ramona Moldovan

‘What is genomics as I’ve never heard of it?’: The challenges of identifying the education needs around an emerging clinical area Michelle Bishop
Edgbaston, UK

Genetic counsellors’ clinical practice in Europe: a mixed method assessment/approach on their contribution
Charlotta Ingvoldstad
Stockholm, SE

Clinical Genetics Educational external assessment (EQA)- assuring improvement in the Clinical Service
Ros Hastings
Oxford, UK

The changing clinical practice of genomic medicine: what are the preferences of and education/training needs of health professionals?
Sylvia Metcalfe
Parkville, AU

Exploring the experiences of genetic health professionals with adoptees
Rhiana Spinoso
Melbourne, AU

Learning the role of genomics in human health: the serious games experience
Serena Oliveri
Milan, IT

20:00 – 21:30 hrs | Opening Networking Mixer

Sunday, June 17, 2018

08:30-10:00 hrs | S01 Prenatal Genetics

joint with ESHG – More Information

10:00-10:30 hrs | Coffee Break, Exhibition, Poster Viewing

10:15 – 11:15 hrs | Poster Viewing with Authors – Group A

11:15 – 12:15 hrs | EBPL2 – The Legal Side of Genomic Care

Chair: Francesca Forzano, Edward Dove

The evolving duty of care in clinical genomics under UK law
Alison Hall
Cambridge, UK

Concerns about genetic discrimination after regulation: a qualitative study of the situation regarding BRCA and Huntington’s disease in Belgium
Annet Wauters
Leuven, BE

Life insurance and genetic discrimination: A barrier for genomic medicine in Australia
Jane Tiller
Melbourne, AU

Working with the public: engaging with consumers about the ethics of and decision to pursue personal genomic testing
Jacqueline Savard
Camperdown, AU

12:15-13:00 hrs | Lunch Break, Exhibition, Poster Viewing

13:00 – 14:30 hrs | EMS1 – Genetic counselling for Children and Adolescents – Communication of genetic information with and within families

Organisers: Ramona Moldovan, Sam Riedijk

Invited speakers: Marion McAllister, Jehannine Austin, Madalina Radu

14:30 – 15:00 hrs | Fruit Break, Exhibition, Poster Viewing

15:00 – 16:30 hrs | Workshop W11 Recontacting in genetics

joint with ESHG – More information

16:30-17:00 hrs | Coffee Break, Exhibition, Poster Viewing

16:45 – 17:45 hrs | Poster Viewing with Authors – Group B

17:45-19:15 hrs | EPL 4 – What’s New in Hereditary Cancer

Chair: Elisabetta Razzaboni, Ignacio Blanco

I remember the feeling not the gene: Families’ experiences of and attitudes towards genetic testing in childhood cancer
Brittany McGill
Randwick, AU

Companions or patients? The impact of family presence in genetic counseling for hereditary breast cancer
Sivia Barnoy
Tel Aviv, IL

Uptake of polygenic risk information among women at potentially high breast cancer risk
Tatiane Yanes
Sydney, AU

Uncertainty related to multigene panel testing for cancer: a qualitative study on counsellors’ and counselees’ views
Niki Medendorp
Amsterdam, NL

The efficacy of genetic counselling for familial colorectal cancer: a meta-analysis
Andrada Ciucă
Cluj-Napoca, RO

Moving into the mainstream: Treatment focussed genetic testing a screening tool or diagnostic resource?
Nina Hallowell
Oxford, UK

Monday, June 18, 2018

08:30-10:00 hrs | EPL 5 – To Know or Not To Know

Chair: Carla G. van El, Rhona M. MacLeod

1 in 39 individuals carries a dominant high-risk disease allele
Helger Yntema
Nijmegen, NL

To report or not to report? That’s not the only question! Analysis of VUS reporting, variant reinterpretation, and recontact policies in clinical genomics consent forms
Danya Vears
Leuven, BE

The patient voice in design of systems to share clinical genomic sequencing data
Clara Gaff
Parkville, AU

Predicting willingness to receive four different types of genetic risk information – A population based study
Ari Haukkala
Helsinki, FI

Disclosure of incidental findings (IFs) and variants of uncertain significance (VUS) to patients: what happens in practice?
Julia el Mecky
Groningen, NL

Consent for Genetic Testing and Disclosure of Results: Shifting the Paradigm to Non-Genetics Clinicians
Kelly Ormond
Stanford, US

10:00-10:30 hrs | Coffee Break, Exhibition, Poster Viewing

10:15 – 11:15 hrs | Poster Viewing with Authors – Group C

11:15-13:00 hrs | Lunch Break, Exhibition, Poster Viewing

11:15 – 12:15 hrs | Aad Tibben Lecture

For the first time this year, EMPAG will have a special lecture to honour a scientist who has made an important mark in the field of (em)PAG.
This year, we will start with its name giver Aad Tibben to value his long lasting career in the field of Psychosocial Aspects of Genetics.
Aad Tibben will present his life’s work in a one hour lecture.

13:00 – 14:30 hrs | Workshop – Contacting genetic relatives: practical implications and ethico-legal issues for healthcare professionals

Organisers:Edward Dove, Nadeem Qureshi

Speakers: Melanie Watson, Maria Katapodi, Frederik Hes, Vicky Chico, Wendy van Zelst-Stam

For several decades, the principle of genetic cascade screening has been to only contact relatives indirectly through the index case. This is exemplified by the cascade screening set up for Huntington’s Disease. More recently, however, health professionals and families have enquired about the health professionals directly contacting relatives of affected individuals. Non-genetic specialist have used this approach – for example, lipid specialists contacting relatives of familial hypercholesterolemia directly by telephone or letter. Further, a recent court case in England has raised profound questions regarding the extent of legal duties owed by health care professionals to non-patient third parties, particularly genetic relatives. In ABC v St George’s Healthcare NHS Trust, a claim was brought by the daughter of a male patient against his clinicians for their failure to inform her about his suffering from Huntington’s Disease (HD), including when she was pregnant. This EMPAG workshop will bring together leading genetics health professionals and ELSI experts to explore the benefits and harms of direct and indirect cascade screening, together with the benefits and harms of contacting genetic relatives (or not).

14:30 – 15:00 hrs | Fruit Break, Exhibition, Poster Viewing

15:00 – 16:30 hrs | Workshop W14 Genomic Quiz

joint with ESHG – More information

16:30-17:00 hrs | Coffee Break, Exhibition, Poster Viewing

16:45 – 17:45 hrs | Poster Viewing with Authors – Group D

17:45-19:15 hrs | Workshop – Developing a multidisciplinary approach in clinical interpretation of NGS variants for Genetic Services

Organisers: Milena Paneque, Rhona Macloed

Speakers: Graeme Black, Georgina Hall

Tuesday, June 19, 2018

09:00-10:30 hrs | S17 | ESHG-ASHG Building Bridges Debate: Germline genome editing – joint with ESHG

10:30 – 11:00 hrs | Coffee Break

11:00-12:30 hrs | EPL 6 – Perinatal decision-making

Chair: Sam Riedijk, Carla van El

Stakeholder views towards prenatal and postnatal fetal mesenchymal stem cell infusions for osteogenesis imperfecta
Melissa Hill
London, UK

Factors contributing to new parents’ perspectives on retention and secondary use of neonatal dried bloodspots – A mixed methods study in the Netherlands
Marleen Jansen
Amsterdam, NL

Slippery slope for oocyte donations
Pinar Tulay
Nicosia, CY

Development and pilot study of the prenatal informed decision-making (PRENID)-scale: a measure for informed decision-making in first trimester prenatal screening
Iris Bakkeren
Rotterdam, NL

Short and long-term psychological impact of an active GP-provided couple-based ECS test-offer in the Dutch general population
Juliette Schuurmans
Groningen, NL

Next-generation counseling: a model for non-invasive prenatal screening results disclosure and patient management
Gabriel Lazarin South
San Francisco, US