ESHG

ESHG Education Committee

Letter 10, October 3, 2006

ESHG-EDUCATION COMMITTEE
Domenico Coviello (Chair, Milan, Italy)
Martina Cornel (Amsterdam, The Netherlands)
Celia DeLozier (USA/Switzerland)
Peter Farndon (Birmingham, UK)
Peter Goetz (Czech Republic)
Shirley Hodgson (London, U.K.)
Alastair Kent (Patients Organizations, GIG and EAGS)
Gyorgy Kosztolanyi (Pécs, Hungary)
Jorge Sequeiros (Porto, Portugal)
Heather Skirton (Plymouth, UK)

Additional collaborating members:
Agnes Bloch-Zupan (Strasbourg, France)
Rodney Harris (Manchester, U.K.)
Vaidutis Kucinskas (Lithuania)
Tayfun Özcelik (Ankara, Turkey)
Fred Petrij (Rotterdam, The Netherlands)
Maria Soller (Lund, Sweden)

Dear ESHG members,

The Education Committee this year has increased its activity and here I am presenting in chronological order the results achieved and/or the events at which myself and/or other member has attended :

1) The draft document of the work performed last year “Patient and Professional Perspectives of Genetic Information/Education in Europe” in conjunction with Eurogentest Unit 6 has been completed and is on the web site for consultation (www.eurogentest.org). Anyone (patients and professionals) interested in genetics services and genetics tests are welcome to send comments to integrate this document.

2) On 8th of March 2006, Prof. Peter Farndon, director the NHS- National Genetics Education and Development Centre (www.geneticseducation.nhs.uk), has organized a meeting in in Birminghan (UK): “Supporting Genetics Education for Health”. It has been very productive to participate to this initiative, most of the research groups involved in genetic education in UK were there with stands and education material on display. A list of the activities can be fond at the web site www.eurogentest.org/…… During this meeting I had the opportunity to establish two new contacts, one with the genetic counselor network and the second one with the Association for Medical Education in Europe (AMEE, www.amee.org).

3) On May 8, 2006, the Education Committee met in Amsterdam during our ESHG conference.
The work in progress was discussed and priority were decided:
a) Update the list of courses available in Europe and set up a web tools to add and search new course on line.
b) Continue the work to complete a draft document on Core Competence in Genetics for Health Professionals.
c) Convene a workshop (Porto September 23-24) to discuss the document.
d) Liason with other International Organization to share ideas, tools, initatives:

-- ASHG Liaison (Celia DeLozier, CD) -- Celia has been in contact with Susanne Haga, chairman of the ASHG Education Committee. The ASHG is pleased for the opportunity to work together and it was suggested that CD attend the ASHG education committee meeting in October in New Orleans to further discuss collaboration. In the meantime, Susanne Haga proposed a specific activity that could be carried out in common : DNA Day, which commemorates the sequencing of the human genome (see website www.ashg.org, section on educational activities). The ASHG had a number of activities this year on April 25, targeting Kindergarden-12th grade, which included: essay contest, chat page, web-based presentations, mentoring. CD summarized the activities and agreed to make a proposal to the committee about what activities might be shared in 2007. Committee members noted that some European countries already have a DNA or similar genetics day, including Holland and perhaps Spain. Turkey is currently hosting an exhibit from the Cole Springs Harbor Symposium, targeting high school students (the six sections include advocacy and genetics and lessons for life). Perhaps this could be kept in Europe until next year? CD will contact education members by e-mail to present the ASHG project and obtain feedback about similar public education initiates in Europe.

-- Nurses in Genetics Liaison (ISONG). Heather Skirton is current President of the International Society of Nurses in Genetics.ISONG is keen to involve more nurses from European countries in its activities and would be willing to work closely with the Education Committee. ISONG is holding the annual Educational and Scientific conference in Europe for the first time in Bristol (UK)from 18-21 May 2007 and wishes to liase with ESHG to ensure that ESHG members have the opportunity to be involved.

-- International Bioethics Committee (UNESCO): George Kosztolanyi is on committee and working on Informed Consent and Public Health Initiatives section. ESHG Education would like him to be our formal liaison person with the IBC.

-- HGSA liaison – Domenico Coviello has been in contact with Sylvia Metcalfe, head of Education Committee of Human Genetic Society of Australasia. Sylvia and Domenico met in Genoa in June to further discuss the possible interaction initiatives. Sylvia was also part of the organizing committee of the ICHG in Brisbane, where a meeting of the heads of the Education Committee paticipating to the International Federation Human Genetics Societies (IFHGS) took place.

4) On May 8, 2006 in Amsterdam, again during our ESHG conference, Prof. Pier Franco Pignatti has organized the 2° meeting of the presidents of nationals society of Human Genetics. Three members of Education Committee were present to present the work in prograss and to establish an European network with contact persons in each EC country interested in genetic education.

5) On May 15-17, 2006 in Manchester (UK) took place an International meeting: “Genetic Counseling Education: Connecting the Global Community”. At this meeting were invited all directors of Genetic Counselling courses worldwide and representatives from several organizations connected with genetic education. Several experiences were compared and a “Transnational Alliance of Genetic Counsellor” (TAGC) has been proposed as umbrella organization under the initial coordination of Prof. Janice G. Edwards, from University of South Carolina, USA. (http://igce.med.sc.edu/conference%20overview.htm).

6) On August 10, 2006 in Brisbane (AU), during the International Congress of Human Genetics (ICHG), Sylvia Metcalfe organized the first meeting of representative of chairman of education committees of societies part of IFHGS (http://www.ifhgs.org) and from other institutions involved in genetic education. The “International Genetics Education Network” (IGEN) has been launched. The overall aim is to provide a sharing of expertise based on agreed education principles. These principles would then be applied appropriately in relation to different contexts of different countries, e.g. professional standards, culture, etc. A mentor network similar to the ASHG mentor network has been proposed. There would be experts in each country that accessible by others and would assist in developing programs. The focus would be on genetics education for healthcare professionals with a clear focus on conceptual and practical education, not clinical or laboratory issues.

7) On September 23-24, 2006, in Porto took place the Eurogentest Unit 6 (Education) workshop where the background paper on genetic core competences for heath professionals has been discussed. The document is under revision and the final draft will be on the web for consultation from January 2007. The document underline the need for a common minimal standard of education and training for all health professionals in Europe, to equip them to practice appropriately. It is obvious that the level of knowledge, skills and attitudes related to genetic healthcare will vary according to the profession of the practitioner, the setting in which he or she worked and the relevance of genetics to his or her area of practice. This document will be useful to each single state to verify and update the curricula at national level.

Please all of you are invited to send us comments, ideas, updates from your country, and any else you want to let us know (including willing to collaborate with the education committee), to help us to set up priorities, to harmonize education and training, and to share experience or tools available.

On behalf of Education Committee,

Domenico Coviello, MD, PhD

ESHG Education Committee meeting
May 8, 2006
ESHG conference - RAI Amsterdam.

Present: Domenico Coviello (Chair), Martina Cornel, , Celia DeLozier, Peter Farndon, Peter Goetz, Shirley Hodgson (part of meeting), George Kosztolani, Taytum Ozecelik, Fred Petry, Jorge Sequerios, Heather Skirton,

Present at the ESHG meeting but not attending due to overlapping meetings: Vaidutis Kucinskas and Alastair Kent.

Apologies: Agnes Bloch-Zuban, Rodney Harris

1) Meeting opened at 10:40 by Domenico Coviello (DC)
Members introduced themselves and gave their backgrounds and involvement in genetics education.

2) Comments on report of the previous meeting: None from those present. DC will solicit e-mail comments from other members.

3) New members of Education Committee and rotation: Welcome to new members, Martina Cornel (The Netherlands) and Peter Goetz (Czech Republic). Prof. Rodney Harris has resigned from the Education Committee due to health problems.
Review of rotation rules in accordance with discussion at the ESHG Board meeting. Term of office is for three years, renewable for one further term of three years. It is proposed that the first terms officially begin from 2004, since the first two years of the committee were a pilot period for the newly proposed Education committee. The first term of office will therefore finish in 2007 and will effect members Domenico Coviello, Celia DeLozier, Shirley Hodgson and George Kosztolany.

4) Nomination of Chairman: Chairman can be nominated by the ESHG Board (DC was approved by Board in November 2004 to replace Celia DeLozier as chairman), or the Board can leave that decision to the committee. The Education Committee members present unanimously requested that Domenico Coviello continue as Chairman.

5) Reports on liaison activity with other societies (ASHG, ISONG, HGSA):

ASHG Liaison (Celia DeLozier, CD) -- Celia has been in contact with Susanne Haga, chairman of the ASHG Education Committee. The ASHG is pleased for the opportunity to work together and it was suggested that CD attend the ASHG education committee meeting in October in New Orleans to further discuss collaboration.
In the meantime, Susanne Haga proposed a specific activity that could be carried out in common : DNA Day, which commemorates the sequencing of the human genome (see website www.ashg.org, section on educational activities). The ASHG had a number of activities this year on April 25, targeting Kindergarden-12th grade, which included: essay contest, chat page, web-based presentations, mentoring. CD summarized the activities and agreed to make a proposal to the committee about what activities might be shared in 2007. Committee members noted that some European countries already have a DNA or similar genetics day, including Holland and perhaps Spain. Turkey is currently hosting an exhibit from the Cole Springs Harbor Symposium, targeting high school students (the six sections include advocacy and genetics and lessons for life). Perhaps this could be kept in Europe until next year? CD will contact education members by e-mail to present the ASHG project and obtain feedback about similar public education initiates in Europe.
DC will mention the proposal for a joint DNA Day to the presidents of national societies who will meet during this congress, to obtain their feedback.
DC suggests that we do an Education Committee report in next ESHG Newsletter, this would be a good opportunity to talk about a DNA-day initiative for spring 2007.

Celia also reported that the ASHG now has a full-time Education Committee staff person. ESHG Education Committee will definitely need some financial and logistic support from the European Society.

Nurses in Genetics Liaison (ISONG). Heather Skirton is current President of the International Society of Nurses in Genetics.ISONG is keen to involve more nurses from European countries in its activities and would be willing to work closely with the Education Committee. ISONG is holding the annual Educational and Scientific conference in Europe for the first time in Bristol (UK)from 18-21 May 2007 and wishes to liase with ESHG to ensure that ESHG members have the opportunity to be involved.
HGSA liaison – Domenico Coviello has been in contact with Sylvia Metcalfe, head of Education Committee of Human Genetic Society of Australasia. Sylvia is also part of the organizing committee of the next ICHG in Brisbane, where a meeting of the heads of the Education Committee of all the Human Genetics Societies part of the International Federation will take place. Sylvia and Domenico will meet in Genoa in June to further discuss the possible interaction initiatives
International Bioethics Committee (UNESCO): George Kosztolanyi is on committee and working on Informed Consent and Public Health Initiatives section. ESHG Education would like him to be our formal liaison person with the IBC.

6) Evaluation of the progress of work on core competencies in genetics in Europe. The following are individuals working on this development for various specialties.

a. Agnes Bloch-Zupan: Dentists
b. Heather Skirton: Midwives, nurses, counseling
c. George Kosztolanyi and Jorge Sequeiros Clinical Geneticists
d. Peter Goetz and Vaidutis Kucinskas: Biologists
e. Domenico Coviello: Health Care Professionals (general medicine)
f. Shirley Hodgson: Cancer Geneticists
g. Peter Farndon: Specialist Health Care Professionals (non geneticists)
h. Martina Cornel: GenEd work

The Education Committee is trying to create a network to collect the work that has already been done on core competencies in Europe. DC would like to see each of the above individuals develop a summary and “position paper” for the workshop in Porto in September (need a working draft of document for that meeting). Peter Goetz and Vaidutis Kucinskas havealready sent a first draft of the specific part of the document.

Some discussion of our goal:
- The general aim is to harmonize education and training in Europe.
- It is unrealistic to set up a common curricula to be adopted by all member states (MS). This is because the different legislations and different education systems still present in Europe.
- It is more realistic to have an ESHG paper suggesting core competencies per profession. In this way each MS can modify their curricula to be able to reach the competence described by the European document.
- This is a major undertaking and may be politically sensitive. Perhaps we should document those who have genetics core curricula in medicine, and concentrate as a society on those professions which may not have a defined curriculum, e.g. counselors and biologists.

7) Future activities:

Eurogentest Unit 6 annual meeting will be in Porto, September 23-24. Will start Saturday noon and run through Sunday afternoon (as in Leuven). The general scheme will be:
- Saturday afternoon professional and patients groups will work separately
- Sunday morning join session (presentation of the work done and discussion)
- Sunday afternoon (13-15) separate work (conclusions and planning).

The steering committee of Unit 6 Meeting will attend the Unit 3 of Eurogenetest (genetic counseling) meeting (21-22 September) to get input on the background document that will be sent also to Unit 3 members.

Website for courses (Eurogenetest) : time did not allow discussion of this topic.
A web window is in development, where it will be possible to enter information on genetic courses organized in every MS. The course will be removed automatically when expired.

ESHG Website and education: time did not allow discussion of this topic.
- Helena Kääriäinen has an assistant to update the ESHG website, and it was decided that the Education Committee we should provide input to improve the information related to educational issues on the site.

Meeting had to be cut short to allow for members to join reunion of Presidents of national genetics societies: was adjourned at 11:30.

UPDATED ESHG-EDUCATION COMMITTEE
(10 members)

Domenico Coviello (Chair, Milan, Italy)
Martina Cornel (Amsterdam, The Netherlands)
Celia DeLozier (USA/Switzerland)
Peter Farndon (Birmingham, UK)
Peter Goetz (Czech Republic)
Shirley Hodgson (London, U.K.)
Alastair Kent (Patients Organizations, GIG and EAGS)
Gyorgy Kosztolanyi (Pécs, Hungary)
Jorge Sequeiros (Porto, Portugal)
Heather Skirton (Plymouth, UK)

Archives:
Letter 13 - March 21 2008
Letter 12 - August 17, 2007
Letter 11 - May 10, 2007
Letter 10 - October 3, 2006
Letter 9 - July 3, 2006
Letter 8 - April 21, 2006

Updated December 4, 2007