| Saturday, May
31, 2008 |
| 14.00-15.30 |
EMPAG/ESHG educational session
ES 4. Difficult counselling cases (joint with EMPAG)
with the support of the Real Patronato sobre Discapacidad
Organisers: F. Ramos, T. Clancy
- Genetic counselling and genetic medicine in clinical
practice in Spain
C. Ayuso
- Organisation of the new profession and the new
masters of genetic counselling in France
N. Philip
- Risk communication of in Fragile-X
A. McConkie-Rosell
|
| 16.00-16.30 |
Welcome addresses |
| 16.30-18.00 |
EMPAG Plenary Session
EPL1. Communicating genetic information and preventive behaviour
Chair: C. Julian-Reynier, J. Brunet-VidalEPL1.1 Recall and
interpretation in genetic counselling, after intake and non-informative
DNA-test results in BRCA1/2: discrepancies, explanations and consequences
J. Vos1,
C. J. Van Asperen1, J. C. Oosterwijk2, E. B. Gomez
Garcia3, F. H. Menko4, J. M. Collee5, A. M.
Stiggelbout6, A. Tibben1;
1Leiden University Medical Center, Center of Human and Clinical
Genetics, dep. of Clinical Genetics, Leiden, The Netherlands, 2University
Hospital Groningen, dep. of clinical genetics, Groningen, The Netherlands,
3Maastricht University Medical Center, dep. of clinical genetics,
Maastricht, The Netherlands, 4VU University Medical Center, dep.
of clinical genetics, Amsterdam, The Netherlands, 5Erasmus
Medical Center Rotterdam, dep. of clinical genetics, Rotterdam, The
Netherlands, 6Leiden University Medical Center, dep. of Medical
Decision Making, Leiden, The Netherlands.
EPL1.2 Is enhanced
information at genetic counselling necessary?- a randomised study
A. Roshanai1,
R. Rosenquist2, K. Nordin1;
1Department of Public Health and Caring Sciences, Uppsala,
Sweden, 2Department of Genetics and Pathology, Uppsala, Sweden.
EPL1.3 Determining the
genetic status of women newly diagnosed with breast cancer prior to
treatment decisions: An ethical challenge
E. A. Lobb1,2,
N. Hallowell3, K. Barlow-Stewart4, G. Suthers5;
1Medical Psychology Research Unit, University of Sydney,
Camperdown, Australia, 2WA Centre for Cancer & Palliative Care,
Curtin University of Technology, Perth, Australia, 3Public Health
Sciences, The University of Edinburgh, Edinburgh, United Kingdom, 4Centre
for Genetics Education, Royal North Shore Hospital, St Leonards, Australia,
5Familial Cancer Unit, Department of Genetic Medicine, Children’s
Youth & Women’s Health Service, Adelaide, Australia.
EPL1.4 Impact of using
family history on motivation to prevent type 2 diabetes: an RCT
M. Pijl1,2,
D. R. M. Timmermans1,2, L. Claassen1,2, A. C. J. W.
Janssens3, G. Nijpels1,4, T. M. Marteau5,
L. Henneman1,2;
1Department of Public and Occupational Health, VU University
Medical Center, Amsterdam, The Netherlands, 2EMGO-Institute, VU
University Medical Center, Amsterdam, The Netherlands, 3Department
of Public Health, Erasmus University Medical Center, Rotterdam, The
Netherlands, 4Department of General Practice, VU University
Medical Center, Amsterdam, The Netherlands, 5Psychology &
Genetics Research group, King’s College, London, United Kingdom.
EPL1.5 Illness risk
representations and preventive behaviour in people diagnosed with Familial
Hypercholesterolemia by DNA-testing
L. Claassen1,
L. Henneman1, I. Kindt2, T. M. Marteau3, D.
R. M. Timmermans1;
1EMGO-Institute, Department of Public and Occupational Health, VU
University Medical Center, Amsterdam, The Netherlands, 2Foundation
for Tracing Hereditary Hypercholesterolemia (StOEH), Amsterdam, The
Netherlands, 3Psychology & Genetics Research Group, King's
College, London, United Kingdom.
|
| 18.30-19.45 |
EMPAG Plenary Session
EPL2. Public policy and public engagement
Chair: G. Evers-Kiebooms, G. Jacopini
EPL2.1 Genetic testing in asymptomatic minors: social and
ethical issues
P. Borry,
K. Dierickx;
Centre for Biomedical Ethics and Law, K.U.Leuven, Leuven, Belgium.
EPL2.2 Public attitudes
towards genetic testing for susceptibility to major depression
A. Wilde1,
B. Meiser1, P. B. Mitchell1, P. R. Schofield2;
1University of New South Wales, Sydney, NSW, Australia, 2Prince
of Wales Medical Research Institute, Sydney, NSW, Australia.
EPL2.3 Exploring Psychiatric
Genetics through Interactive Drama
F. Ticehurst1,
B. Williams2, L. Osborn3, P. Gibbins4, J.
Davies4;
1Wales Gene Park, Cardiff, United Kingdom, 2Genetic
Interest Group, Cardiff, United Kingdom, 3Freelance Writer,
Cardiff, United Kingdom, 4Gwent Theatre Company, Abergavenny,
United Kingdom.
EPL2.4 Professional
ambivalence: accounts of ethical practice in childhood genetic testing
M. A. Arribas-Ayllon,
S. Sarangi, A. Clarke;
Cardiff University, Cardiff, United Kingdom.
|
| 20.00 |
Welcome reception |
|
|
| Sunday, June
1, 2008 |
| 08.45-10.15 |
ESHG/EMPAG
Symposium S03: The future of
genetic counselling
Chair: J.J. Cassiman, T. ClancyS03.2 Medical Genetic services in developing countries
(20')
A. Christianson;
Division of Human Genetics, National Health Laboratory Services & University
of the Witwatersrand, Johannesburg, South Africa.
S03.3 Genetic testing and private companies. The US as a
model for Europe? (15')
M. Aspinal;
Genzyme Corporation, Westborough, MA, United States
S03.4 Are genetic and molecular biomarkers ready for the
clinic? (20')
R. Zimmern;
PHG Foundation Cambridge, Strangeways Research Laboratory, Cambridge, United
Kingdom. |
| 10.15-11.15 |
Coffee and poster viewing |
| 11.15-12.15 |
Poster discussion with presenters (even
numbers) |
| 13.15-14.45 |
ESHG/EMPAG workshops
|
| 15.00-16.30 |
EMPAG Plenary Session
EPL3. Pre-implantation and predictive testing
for cancer predisposition
Chair: J. Rocha, T. ClancyEPL3.1 Patients’ attitudes
to the use of preimplantation genetic diagnosis for inherited
predispositions to bowel cancer
A. A. D. Melville, H.
E. Musgrave, T. Clancy;
Medical
Genetics Research Group and Regional Genetics Service, University of
Manchester and CMMC NHS Trust, Manchester, United Kingdom.
EPL3.2 Pre-implantation
genetic diagnosis (PGD) and prenatal diagnosis (PND) for cancer
predisposition syndromes: reported practices and attitudes of French
professionals
C. M. Julian-Reynier1,2,
F. Chabal3, F. Nowak4, T. Frebourg5, D.
Lemery6, C. Noguès7, F. Puech8, F. Thepot9,
D. Stoppa-Lyonnet10;
1INSERM (UMR912), Marseille, France, 2Institut Paoli-Calmettes,
Marseille, France, 3UMR912 INSERM, Marseille, France, 4Institut
National du Cancer, Paris, France, 5University Hospital, Rouen,
France, 6University Hospital, Clermont-Ferrand, France, 7Regional
Cancer Centre, Saint-Cloud, France, 8University Hospital (Jeanne
de Flandre Hospital), Lille, France, 9Agence de Biomédecine,
Paris, France, 10Institut Curie, Paris, France.
EPL3.3 Motivations for
genetic testing among individuals at risk of hereditary breast-ovarian
cancer (HBOC) and Lynch syndromes
D. Fortuny1,
N. Gadea1, B. Graña2, T. Ramón y Cajal3, A.
Torres4, J. Brunet2, A. Velasco2, E. Darder5,
J. Sánz4, C. López3, J. Balmaña1;
1Hospital Universatario Vall d'hebrón, Barcelona, Spain, 2Medical
oncology department ICO, Hospital Josep Trueta, Girona, Spain, 3Medical
oncology department. Hospital de Sant Pau, Barcelona, Spain, 4Medical
oncology department, Hospital Sant Joan, Reus, Spain, 5Medical
oncology department ICO, Hospital Josep Trueta, Barcelona, Spain.
EPL3.4 Exploring the
influence of the family social network on the psychological well-being of
individuals undergoing genetic counseling and testing for Lynch syndrome
D. W. Hadley,
S. Ashida, N. R. Kuhn, J. F. Jenkins, C. M. McBride, L. M. Koehly;
National Institutes of Health, Bethesda, MD, United States.
EPL3.5 Genetic counselling
and testing for melanoma risk in Australia: A prospective study of uptake
and psychological implications
N. A. Kasparian1,2,
B. Meiser3,2, P. N. Butow4, J. M. Simpson5,
G. J. Mann6;
1School of Women's and Children's Health, University of New South
Wales, Kensington, Australia, 2Department of Medical Oncology,
Prince of Wales Hospital, Randwick, Australia, 3Prince of Wales
Clinical School, University of New South Wales, Kensington, Australia,
4Medical Psychology Research Unit, School of Psychology, University of
Sydney, Sydney, Australia, 5School of Public Health, University
of Sydney, Sydney, Australia, 6Westmead Institute for Cancer
Research, University of Sydney at Westmead Millennium Institute, Westmead,
Australia.
|
| 17.15-18.45 |
ESHG/EMPAG
Symposium S05: Management of
inherited cancers
Chair: T. Frébourg, C. LazaroS05.1 Guidelines for the clinical management of Lynch
syndrome and adenomatous polyposis (30')
H. F. Vasen;
Department of Gastroenterology & Medical Oncology, Leiden University Medical
Centre, Leiden, Netherlands.
S05.2 Evaluation of breast and ovarian cancer screening
programmes in BRCA1 and BRCA2 mutation carriers : the UK and Dutch
experience (30')
D. G. Evans1, K.
N. Gaarenstroom2, D. Stirling3, A. Shenton1,
L. Maehle4, A. Dørum4, M. Steel5, F. Lalloo1,
J. Apold6, M. E. Porteous3, H. F. A. Vasen7,
C. J. van Asperen8, P. Moller4;
1Medical Genetics Research Group and Regional Genetics Service,
University of Manchester and Central Manchester and Manchester Children’s
University Hospitals NHS Trust, St Mary's Hospital, Manchester, United
Kingdom, 2Department of Gynaecology, Leiden University Medical
Center, Leiden, Netherlands, 3South East of Scotland Genetics
Service, Western General Hospital, Edinburgh, United Kingdom, 4Section
for Inherited Cancer, Department of Medical Genetics, Rikshospitalet
Radiumhospitalet Clinical Center, Oslo, Norway, 5University of St
Andrews, Bute Medical Buildings, St Andrews, United Kingdom, 6Centre
of Medical Genetics and Molecular Medicine, Haukeland University Hospital,
and Institute of Clinical Medicine, University of Bergen, Bergen, Norway,
7The Netherlands Foundation for the Detection of Hereditary
Tumours and the Department of Gastroenterology, Leiden University Medical
Center, Leiden, Norway, 8Center for Human and Clinical Genetics,
Department of Clinical Genetics, Leiden University Medical Center, Leiden,
Norway. S05.03 Managing genetic risk: Some issues for BRCA1 and 2
mutation carriers (30')
N. Hallowell;
Public Health Sciences, University of Edinburgh, Edinburgh, United Kingdom.
|
|
|
| Monday, June
2, 2008 |
| 08.45-10.15 |
EMPAG Plenary Session
EPL4. Antenatal screening and testing
Chair: A. Tibben, A. McConkie-RosellEPL4.1 Antenatal screening
for fetal abnormality - ensuring informed choice for parents
H. Skirton1,
O. Barr2, J. Frost3, T. Wells1;
1University of Plymouth, Taunton, United Kingdom, 2University
of Ulster, Belfast, United Kingdom, 3University of Plymouth,
Plymouth, United Kingdom.
EPL4.2 The role of
attitudinal ambivalence towards Down’s syndrome in prenatal testing
decisions
L. D. Bryant1,
J. M. Green2, J. Hewison1;
1Leeds Institute of Health Sciences, University of Leeds, Leeds,
United Kingdom, 2Department of Health Sciences, University of
York, York, United Kingdom.
EPL4.3 ‘Balance’ is in the
eye of the beholder: perceptions of balanced information to support informed
choices via AnSWeR (Antenatal Screening Web Resource)
S. Ahmed,
L. D. Bryant, J. Hewison;
University of Leeds, LEEDS, United Kingdom.
EPL4.4 Testing times,
challenging choices; women, prenatal testing and genetic counselling
J. M. Hodgson1,
M. A. R. Sahhar1,2, L. H. Gillam1,3, S. A. Metcalfe1,3;
1Murdoch Childrens Research Institute, Melbourne, Australia,
2Genetic Health Services Victoria, Melbourne, Australia, 3University
of Melbourne, Melbourne, Australia.
EPL4.5 "It's something I
need to consider": women's decisions about population carrier screening for
fragile X syndrome
A. D. Archibald1,2,
A. M. Jaques1, S. Wake3, S. A. Metcalfe1,2;
1Murdoch Childrens Research Institute, Melbourne, Australia,
2University of Melbourne, Melbourne, Australia, 3Genetic
Health Services Victoria, Melbourne, Australia.
|
| 10.15-11.15 |
Coffee and poster viewing |
| 11.15-12.15 |
Poster discussion with presenters (odd
numbers) |
| 13.15-14.45 |
EMPAG Concurrent Workshops
EPW1.1 Talking about disability in prenatal genetic counselling sessions:
Identifying tensions and developing strategies
J. M. Hodgson1,
J. Weil2;
1Murdoch Childrens Research Institute, Melbourne, Australia,
2University of California, San Francisco, CA, United States.
EPW2. Assessing Quality of Counselling in the Context of Genetic Testing
Workshop
H. Skirton1,
H. Kaariainen2, E. Rantanen3, M. Hietala3,
J. Sequeiros4, U. Kristoffersson5, L. Kerzin-Storrar6,
A. Tibben7, G. Evers-Keibooms8, A. Faucett9,
A. Clarke10;
1Faculty of Health and Social Work, University of Plymouth,
Taunton, United Kingdom, 2National Public Health Institute,
Helsinki, Finland, 3Department of Medical Genetics, University of
Turku, Turku, Finland, 4IBMC, University of Porto, Porto,
Portugal, 5Department of Clinical Genetics, University Hospital,
Lund, Sweden, 6Regional Genetics Service & Medical Genetics
Research Group, CMMC & University of Manchester, Manchester, United Kingdom,
7Centre for Human and Clinical Genetics, Leiden University
Medical Centre, Leiden, The Netherlands, 8Centre for Human
Genetics, University of Leuven, Leuven, Belgium, 9Emory
University School of Medicine, Atlanta, GA, United States, 10Institute
of Medical Genetics, Cardiff University, Cardiff, United Kingdom.
|
| 15.00-16.30 |
EMPAG Plenary Session
EPL5. Regulatory issues in genetics
Chair: A. Brand, L. LobbEPL5.1 Verification of
consumers’ experiences and perceptions of genetic discrimination and its
impact on utilisation of genetic testing
K. K. Barlow-Stewart1,
S. Taylor2, S. Treloar3, M. Stranger4,5, M.
Otlowski4,5;
1The Centre for Genetics Education, Sydney, Australia, 2Department
of Social Work and Human Services, Central Queensland University,
Rockhampton, Australia, 3Centre for Military and Veterans’
Health, The University of Queensland, Brisbane, Australia, 4Centre
for Law and Genetics, University of Tasmania, Hobart, Australia, 5School
of Law, University of Tasmania, Hobart, Australia.
EPL5.2 The Multiplex
Initiative: a study to determine who seeks free multiplex genetic
susceptibility testing among a healthy population of American adults
C. M. McBride1,
S. Hensley-Alford2, R. Reid3, E. Larson3,
A. D. Baxevanis1, L. C. Brody1;
1National Human Genome Research Institute, National Institutes of
Health, Bethesda, MD, United States, 2Henry Ford Health System,
Detroit, MI, United States, 3Group Health Cooperative, Seattle,
WA, United States.
EPL5.3 Willingness for blood
donation for genomic studies: a comparative study between scientists and the
public
K. Muto1,
A. Nagai2, A. Tamakoshi3, I. Ishiyama2, K.
Kato4, Z. Yamagata2;
1The University of Tokyo, Tokyo, Japan, 2Yamanashi
University, Yamanashi, Japan, 3Aichi Medical University, Aichi,
Japan, 4Kyoto University, Kyoto, Japan.
EPL5.4 Privatising
susceptibility to disease: the need for regulation?
A. J. Clarke1,
I. Frayling2, M. Arribas-Ayllon1, S. Sarangi1;
1Cardiff University, Cardiff, United Kingdom, 2University
Hospital of Wales, Cardiff, United Kingdom.
EPL5.5 Gene patents and
diagnostics: numbers don’t count
N. Berthels1,2,
B. Verbeure1, E. van Zimmeren1, G. Van Overwalle1,
G. Matthijs2;
1Centre for Intellectual Property Rights, KULeuven, Leuven,
Belgium, 2Center for Human Genetics, KULeuven, Leuven, Belgium.
|
| 17.15-18.45 |
ESHG/EMPAG
Symposium S10: Advances in prenatal diagnosis and therapy
Chair: M. Macek, T. ClancyS10.1 In utero stem cell transplantation: where are we
now? (30')
T. H. Bui;
Department of Molecular Medicine, Clinical Genetics Unit, Stockholm,
Sweden.
S10.2 Non-invasive prenatal diagnosis of Down syndrome: a
challenging puzzle in circulating fetal nucleic acid research
(30')
R. Chiu;
Li Ka Shing Institute of Health Sciences and Department of Chemical
Pathology, The Chinese University of Hong Kong, Prince of Wales Hospital,
Shatin, New Territories, Hong Kong. S10.1 The regulation of prenatal and preimplantation
genetic diagnosis in the UK (30')
E. Jackson;
Law Department, London School of Economics, London, United Kingdom. |
| 20.00 |
Congress party |
|
|
| Tuesday, June
3, 2008 |
| 08.45-10.15 |
EMPAG Concurrent Workshops:
EPW3. Genetic Counseling and predictive testing: A dynamic perspective
A. Tibben1,2,
L. Hoffman3;
1Leiden University Medical Centre, Leiden, The Netherlands,
2Erasmus Medical Centre Rotterdam, Rotterdam, The Netherlands, 3Department
of Oncology, Faculty of Medicine, McGill University, Montreal, QC, Canada.EPW4. Analysing the social dimensions of coping in
families: a workshop on presenting the results in clinical practice
H. G. Van Spijker,
T. Brouwer;
Medical Genetics University Medical Centre, 3508 CA Utrecht, The
Netherlands.
|
| 10.45-12.15 |
EMPAG Plenary Session
EPL6. Living with genetic conditions
Chair: T. Clancy, C. Julian-ReynierEPL6.1 Psychosocial Impact
of X-linked Carrier Status: Experiences of Female Adrenoleukodystrophy
Carriers
J. Bowen1,
R. Mountford2, L. Kerzin-Storrar3;
1Sheffield Clinical Genetics Service, Sheffield Children's NHS
Foundation Trust, Sheffield, United Kingdom, 2Department of
Medical Genetics, Liverpool Women's NHS Foundation Trust, Liverpool, United
Kingdom, 3Regional Genetic Service and Medical Genetics Research
Group, CMMC NHS Trust and University of Manchester, Manchester, United
Kingdom.
EPL6.2 The marital
relationship and psychological wellbeing in patients with Myotonic Dystrophy
R. Timman1,
A. Rotteveel2, A. Wintzen1, A. Tibben2;
1Neurology, Leiden, The Netherlands, 2Human and
Clinical Genetics, Leiden, The Netherlands.
EPL6.3 Living with NF1: The
persectives of young people
K. F. May1,
R. A. Collier2, L. Kerzin-Storrar3;
1West Midlands Regional Clinical Genetics Service, Birmingham,
United Kingdom, 2Nottingham Regional Clinical Genetics Service,
Nottingham, United Kingdom, 3North West Regional Genetics
Service, Manchester, United Kingdom.
EPL6.4 Quality of life in
hypertrophic cardiomyopathy mutation carriers
I. Christiaans1,
I. M. van Langen1, E. Birnie2, G. J. Bonsel2,
A. A. M. Wilde3, E. M. A. Smets1,4;
1Department of Clinical Genetics, Academic Medical Centre,
Amsterdam, The Netherlands, 2Institute of Health Policy and
Management, Erasmus Medical Centre, Rotterdam, The Netherlands, 3Department
of Cardiology, Academic Medical Centre, Amsterdam, The Netherlands, 4Department
of Medical Psychology, Academic Medical Centre, Amsterdam, The Netherlands.
EPL6.5 Developing a cancer
genetic-specific measure of coping
C. Phelps1,
P. Bennett2, H. Jones1, K. Brain1, K. Hood3,
A. Murray4;
1Institute of Medical Genetics, School of Medicine, Cardiff
University, Cardiff, United Kingdom, 2Nursing, Health and Social
Care Research Centre; Cardiff University, Cardiff, United Kingdom, 3Centre
for Health Sciences Research; Cardiff University, Cardiff, United Kingdom,
4Institute of Medical Genetics, University Hospital of Wales,
Cardiff, Cardiff, United Kingdom.
|
| 12.15 |
End of EMPAG meeting |