Saturday, May 31, 2014

EMPAG Workshop: The impact of risk reducing surgery

Opening: joint with ESHG Welcome addresses

EPL1 - EMPAG Plenary Session: Psychosocial issues in cancer genetics

EPL1.1

The impact of total gastrectomy upon e-cadherin carriers: experiences of eating

Nina Hallowell, S. Badger, S. Richardson, R. Fitzgerald, C. Caldas, J. Lawton;
Edinburgh, United Kingdom

EPL1.2

Impact of rapid genetic counselling and testing on primary surgery and psychosocial well-being in newly diagnosed breast cancer patients: Findings from a randomized controlled trial

Marijke R. Wevers, M.G.E.M. Ausems, E.M.A. Bleiker, E.J.T. Rutgers, A.J. Witkamp, D.E.E. Hahn, T. Brouwer, R.B. van der Luijt, F.B.L. Hogervorst, T. van Dalen, E.B. Theunissen, B. van Ooijen, M.A.J. de Roos, P.J. Borgstein, B.C. Vrouenraets, E. Vriens, W.H. Bouma, H. Rijna, J.P. Vente, S. Verhoef, N.K. Aaronson;
Amsterdam, Netherlands

EPL1.3

Disclosure of psychosocial research results: a randomized study among GENEPSO-? cohort participants

Julien Mancini, E. Le Cozannet, N. Resseguier, E. Bureau, A.D. Bouhnik, C. Lasset, E. Mouret-Fourme, C. Noguès, C. Julian-Reynier;
Marseille, France

EPL1.4

Prevalence and detection of psychosocial problems in cancer genetic counseling

W. Eijzenga, Eveline M. Bleiker, D.E.E. Hahn, L.E. van der Kolk, G.N. Sidharta, N.K. Aaronson;
Amsterdam, Netherlands

EPL1.5

Developing a group programme for BRCA1/2 mutation carriers who underwent prophylactic mastectomy

Mariska den Heijer, J. Gopie, A. Tibben;
Rotterdam, Netherlands

EPL2 - EMPAG Plenary Session: Reproductive decision making

EPL2.1

Ok for us, not for them: Patients and genetic counsellors’ experiences of NIPT and views on wider use

Angela Effa, E. Alexander, S.E. Kelly, L. Kerzin-Storrar;
Manchester, United Kingdom

EPL2.2

Non-invasive prenatal testing (NIPT): opinions and interest among pregnant women in a country with relative low uptake of prenatal screening

Rachel V. van Schendel, D.R.M. Timmermans, W.J. Dondorp, E. Pajkrt, J.H. Kleinveld, L. Henneman;
Amsterdam, Netherlands

EPL2.3

Received information and knowledge about Down syndrome among pregnant women and their partners coming for a first trimester combined (CUB) test? - Do they have the knowledge to make the decision

Charlotta Ingvoldstad, E. Ternby, G. Annerén, P. Lindgren, O. Axelsson;
Solna, Sweden

EPL2.4

Diagnosis Down syndrome: a cross-cultural study of family experiences

Marcia L. Van Riper;
Chapel Hill, United States

EPL2.5

Dynamics of prenatal screening: blurring boundaries between normative frameworks

Wybo Dondorp, G. De Wert;
Maastricht, Netherlands

EPL2.6

Stigma and reproduction: the place of stigma in reproductive decisions

Angus J. Clarke;
Cardiff, United Kingdom

EPL3 - EMPAG Plenary Session: Genomic testing: psychosocial and ethical issues

EPL3.1

How do research participants perceive “uncertainty” in genomic sequencing?

Barbara B. Biesecker, W. Klein, L.G. Biesecker, P.K. Han;
Bethesda, United States

EPL3.2

Discussing clinical utility; The role of patients and their families

Simone van der Burg, L. Krabbenborg;
Nijmegen, Netherlands

EPL3.3

Variants in Practice Study (VIP): High risk women’s responses to receiving genetic test results for genomic variants associated with breast cancer risk

Mary-Anne Young, P. James, G. Mitchell, L. Forrest, S. Sawyer, N. Hallowell;
Melbourne, Victoria, Australia

EPL3.4

To Disclose, or Not to Disclose? The Context Matters

Vasiliki Rahimzadeh, D. Avard, K. Sénécal, B.M. Knoppers, D. Sinnett;
Montreal, Canada

EPL3.5

Comparing the views of Australian parents, paediatricians and genetic health professionals about disclosure of genomic results

Erin Turbitt, J. Halliday, D. Amor, S. Metcalfe;
Parkville, Australia

EPL3.6

The experiences and views of health care professionals and researchers regarding the feedback of results in the context of next generation sequencing in oncology

H. Howard, A. Mahalatchimy, Alexandra Soulier, A. Blassime, A. Cambon-Thomsen;
Toulouse, France

20:00 - 21:30

Sunday, June 1, 2014

EMPAG EES1 - EMPAG Educational Session: Responding to guilt and shame

EES1.1

Responding to guilt and shame

C. Baguley;
Psychological Professions Network North West, Manchester, United Kingdom.

Poster Viewing with Authors (odd poster numbers)

EPL4 - EMPAG Plenary Session: Family Dynamics

EPL4.1

Parental influences on decision making in Duchenne/Becker clinical trials

Holly L. Peay, B.B. Biesecker, J.V. Bowie, H. Scharff, K. Nagaraju, J. Piacentino, A. Tibben;
Richmond, United States

EPL4.2

The impact on children and parents of participation in clinical research trials for Morquio A syndrome and Sanfilippo A syndrome

Deborah L. Holliday, M. Farag, C. Breen, S. Jones, T. Clancy;
Leeds, United Kingdom

EPL4.3

Why do parents request carrier testing in their healthy children? A comparison of genetic health professionals’ and parents’ views

Danya F. Vears, C. Delany, J. Massie, L. Gillam;
Parkville, Australia

EPL5 - EMPAG Plenary Session: Access to genetic services and testing

EPL5.1

What is the role of genetic counsellors? A systematic review of evidence

Heather Skirton, C. Cordier, C. Ingvoldstad, N. Taris, C. Benjamin;
Plymouth, United Kingdom

EPL5.2

Referral for breast cancer genetic counseling among Turkish and Moroccan patients in The Netherlands

Jessica E. Baars, A.M. van Dulmen, M. Velthuizen, E.B.M. Theunissen, B.C. Vrouenraets, A.N. Kimmings, T. van Dalen, B. van Ooijen, A.J. Witkamp, M.G.E.M. Ausems;
Utrecht, Netherlands

EPL5.3

Genetic counselling for Indigenous populations: an exploratory study from the perspective of Australian genetic health professionals

Lyndon Gallacher, M. Sahhar, I. Macciocca, E. Kowal;
Oxford, United Kingdom

EPL5.4

Attitudes toward consumer-targeted genetic testing in Japan

Kaori Muto, A. Nagai, H. Hong, Z. Yamagata;
Tokyo, Japan

EPL5.5

Predictors of adverse psychological reactions to receipt of direct-to-consumer genome-wide profiling results

K.M. Broady, Kelly E. Ormond, N.J. Schork, E.J. Topol, A.J. Butte, C.S. Bloss;
Stanford, United States

EPL5.6

“It is a very lonely path”: Exploring experiences of establishing a genetic support group in Victoria, Australia

Louisa Di Pietro, E. Swain, L. Forrest, M. Sahhar;
Parkville, Melbourne, Australia

EPL6 - EMPAG Plenary Session: Facilitating communication about genetic information

EPL6.1

Co-designing an Intervention to facilitate family communication about inherited genetic conditions (IGC).

Emma Rowland, S. Hutchison, C. Jackson, L. Longworth, M. McAllister, R. Macleod, C. Patch, F. Ulph, A. Metcalfe;
London, United Kingdom

EPL6.2

A randomised controlled trial of a genetic counselling intervention to enhance family communication - The GIF Study

Jane L. Halliday, S.A. Metcalfe, M. Aitken, S.M. Donath, C.L. Gaff, I.M. Winship, M.B. Delatycki, L.L. Skene, J.M. Hodgson;
Parkville, Australia

EPL6.3

“What would you like to know?” Patients' attitudes towards communication of incidental findings emerging from new sequencing technologies

Lea Godino, G. Rodella, G. Severi, M. Mirra, G. Lanzoni, M. Romagnoli, A. Tranchina, G. Tortora, C. Graziano, A. Wischmeijer, M. Seri, D. Turchetti;
Bologna, Italy

EPL6.4

Genomic investigations: health care professional (HCP) and family experiences of managing incidental information in clinical practice

Gillian Crawford, A. Fenwick, A. Lucassen;
Southampton, United Kingdom

EPL6.5

"Very often the answer's not black or white": Exploring communication in paediatric clinical genetic consultations

Jean Paul, S. Metcalfe, L. Stirling, J. Hodgson;
Melbourne, Australia

EPL6.6

Communicating oncogenetic information: do gastroenterologists and surgeons discuss heredity with their patients and, if so, what and how?

Kirsten F.L. Douma, E. Dekker, E.M.A. Smets, C.M. Aalfs;
Amsterdam, Netherlands

ESHG Symposium S06. Risk perception and risk communication, joint with ESHG

S06.1 Risk is more than a number: About risks and probabilities and people's preceptions of genetic risks, Danielle Timmermans, Amsterdam, The Netherlands

S06.2 Risk perception: What could be at stake in multiple genetic testing?, Claire Julian-Reynier, France

S06.3 Methods of communicating complex statistical information, Angie Fagerlin, United States

Monday, June 2, 2014

ESHG Symposium S13. Non-invasive prenatal testing, joint with ESHG

S13.1 State of the Art of Non-Invasive Prenatal Testing, Lyn S Chitty, United Kingdom

S13.2 Noninvasive prenatal testing creates an opportunity for antenatal treatment of Down syndrome, Diana W. Bianchi, United States

S13.3 Clinical and social implications of NIPT, Kelly Ormond, United States

Poster Viewing with Authors (even poster numbers)

EPL7 - EMPAG Plenary Session: Autonomy and consent

EPL7.1

Consent and confidentiality in clinical genetics: a qualitative study

Sandi Dheensa, A. Fenwick, A. Lucassen;
Southampton, United Kingdom

EPL7.2

Autonomy and emotions: Professional challenges in seeking consent to genetic testing

Hannah E. Shipman, A.J. Clarke;
Cardiff, United Kingdom

EPL7.3

Randomized controlled trial of a telephone-based peer support program for female carriers of a BRCA1 or BRCA2 mutation: Impact on psychological distress

Bettina Meiser, V. White, M. Young, A. Farrelly, M. Jefford, S. Ieropoli, J. Duffy, I. Winship;
Randwick, Australia

EPL8 - EMPAG Plenary Session: Psychosocial issues in prenatal & preimplantation diagnosis

EPL8.1

Women’s experiences following a prenatal diagnosis of fetal abnormality: The PeTALS project

Jan M. Hodgson, M.A. Menezes, S.A. Metcalfe, J.L. Halliday, J. Fisher, K. Petersen, C. Hickerton, B.J. McClaren;
Melbourne, Australia

EPL8.2

Experiences of young Huntington's disease carriers and their partners solliciting a prenatal and/or pre-implantation genetic diagnosis: a qualitative study.

Ariane J. Van Tongerloo, A.M. De Paepe;
9000 Ghent, Belgium

EPL8.3

Difficult decisions in prenatal diagnosis - patients’ experiences of decision-making under uncertainty, and the implications for expanding the offer of prenatal testing.

Samantha Leonard;
Bristol, United Kingdom

EPL8.4

Offering a choice between 5 Mb and 0.5 Mb prenatal whole genome SNP array analysis: are pregnant couples able of making informed decisions?

Sanne L. van der Steen, K.E.M. Diderich, S.R. Riedijk, J. Verhagen-Visser, L.C.P. Govaerts, M. Joosten, M.F.C.M. Knapen, F.A.T. de Vries, D. Van Opstal, M.I. Srebniak, A. Tibben, R.H. Galjaard;
Rotterdam, Netherlands

EPL8.5

SNP Array in prenatal diagnosis; first impressions on the psychological impact of receiving a susceptibility locus s a test result

Judith Visser, L.P.C. Govaerts, S.L. van der Steen, K.E.M. Diderich, M. Joosten, M.F.C.M. Knapen, F.A.T. de Vries, D. Van Opstal, M.I. Srebniak, A. Tibben, S.R. Riedijk, R.H. Galjaard;
Rotterdam, Netherlands

EPL8.6

Professional views about prenatal aCGH-testing

Shiri Shkedi-Rafid, A. Fenwick, D. Wellesley, A.M. Lucassen;
Southampton, United Kingdom

EPL9 - EMPAG Plenary Session: Lessons learned and new issues in predictive testing

EPL9.1

Predictive testing for Huntington Disease: Lessons learned from 24 years' experience

Fiona H. Richards, M.J. Wilson;
Westmead, Australia

EPL9.2

Patient views on the delivery of predictive test counselling services for Huntington’s Disease.

Mary E. Jones, R. MacLeod;
Manchester, United Kingdom

EPL9.3

Quality issues in genetic counselling practice for presymptomatic testing: a European Delphi study

Milena Paneque, J. Sequeiros, H. Skirton;
Porto, Portugal

EPL9.4

Experiences and implications of young women undergoing predictive BRCA testing under the age of 30

Kate Brunstrom, A. Murray, M. McAllister;
Cardiff, United Kingdom

EPL9.5

The experiences of BRCA1/2 mutation positive women in Northern Norway

Nina Strømsvik, M. Myklebust, E. Gjengedal;
Tromsø, Norway

EPL9.6

Genetic test declining and high personal colorectal cancer risk perception in DNA mismatch repair gene mutation families

Louisa Flander, A. Ugoni, L. Keogh, H. Niven, A. Rutstein, A. Ko Win, D. Ait Ouakrim, C. Gaff, M. Jenkins, I. Winship;
Parkville, Australia

EMPAG EES2 - EMPAG Educational Session: Qualitative and quantitative methods in psychosocial research

EES2.1

Qualitative and quantitative methods in psychosocial research

K. O'Doherty;
Guelph, ON, Canada

B. Meiser;
Randwick, Australia

Tuesday, June 3, 2014

ESHG-ASHG Building Bridges Session PL3:

"Towards finding global agreement on..."

What IF... (Incidental Findings), an interactive Debate - joint with EMPAG

Moderator:

• Han Brunner, The Netherlands

Discussants:

• Angus Clarke, United Kingdom
  
  
• Martina Cornel, The Netherlands
  
  
• Robert Green, United States
  
  
• Stephen Kingsmore, United States
  
  
• Marjolijn Kriek, The Netherlands (tbc)
  
  
• Arnold Munnich, France

ESHG Concurrent Session C22 - Returning results: Ethical and legal issues (joint ESHG/EMPAG session)

C22.1

The impact of reporting exome and whole genome sequencing: Predicted frequencies of primary, secondary and incidental findings based on modelling

Leslie Burnett, L.C. Ding, R.M. Lew, D. Chesher, A.L. Proos;
Sydney, Australia

C22.2

Defending the child’s right to an open future concerning genetic information.

Annelien L. Bredenoord*, M.C. de Vries, J.J. van Delden;
Utrecht, Netherlands

C22.3

Implementation of a duty-to-recontact system in molecular and clinical genetics: perspectives from professionals and patients

Mirjam Plantinga, W. Lamers, A.V. Ranchor, M.A. Verkerk, E. Birnie, I.M. van Langen;
Groningen, Netherlands

C22.4

International views on sharing incidental findings from whole genome research

Anna Middleton, M. Parker, C. Wright, H. Firth, E. Bragin, M. Hurles, O. DDD Project;
Cambridge, United Kingdom

C22.5

Newborn screenings and whole genome sequencing: the real need of a genuine public involvement

Marta Tomasi, A. Santosuosso;
Trento, Italy

C22.6

Current Developments in the Regulation of Direct-to-Consumer Genetic Testing in Europe

Louiza M. Kalokairinou*, H.C. Howard, P. Borry;
Leuven, Belgium