Belgian Society of Human Genetics absl-vzw Date 22nd May 2012

Board:

Thomy de Ravel (2010-2014), president

Katrina Rack (2012-2016) secretary

Lut Van Laer (2012-2016), treasurer

Hélène Antoine-Poirel (2012-2016)

Paul Coucke (2010-2014)

Cécile Libioulle (2012-2016)

Sonia Van Dooren (2010-2014)

Catheline Vilain (2010-2014)

MINUTES of the BeSHG Board Meeting held on 11th May 2012 from 12.30 to 2.30pm

at UZ Brussel, Centre for Medical Genetics, “multifunctionele ruimte”, Brussels

1. Apologies: None

2. Approval of the Minutes of the previous Board Meeting held on 27th March 2012.

There was one amendment concerning the Objectives 2012-2014 - last point regarding the BeSHG having a stronger link with patient support groups. Hélène did not suggest that there would be a conflict between the roles of the High Council and the BeSHG but rather that there might be a redundancy between some of their goals. The Minutes were thereafter approved.

3. Annual BeSHG Meetings

a. 2012 final feedback

The photos will be sent to Bjorn for publication on the BeSHG website. The final cost/income of the 2012 meeting has almost been finalised. There are still some outstanding payments to be received from the sponsors. Paul will contact Pascale Hilbert to establish the current situation and will contact the relevant sponsors to obtain the outstanding payment. The formalities of sponsorship were unclear eg. Do they have a signed contractual agreement? Paul will look into the organisation of sponsorship. The estimated outstanding non paid bills are of the order of 1000 Euros. These costs may be offset by outstanding sponsorship payments.

b. 2013 progress

Sonia presented the proposed program. The topic of the day will follow “human development from conception to old age”. There was no objection to the choice of topics or speakers. Final selection will be left to the UZBrussel team. They will start to contact speakers.

The introduction of a new session to encourage participants to visit the posters was proposed. This ‘poster teaser’ session would consist of a one slide presentation of the best abstracts selected by the Board. The number of presentations and the time allocated need to be determined so as to allow sufficient time for poster viewing and visits to the sponsor stands. Technicians would be free to submit posters if they so wished.

Estimation of the cost of the 2013 meeting was distributed. Several additional costs, which have not as yet been budgeted, are likely to be incurred. Electricity is an additional payment, which is expensive, therefore needing to be carefully budgeted. The requirements of the sponsors need to be established. Those requiring extra plugs may have to pay a higher rate. Internet is also an additional charge - whether this is necessary and the extent of coverage needs to be determined. We are obliged to use the venue’s internal catering service, which is expensive at 49.50 Euros per person. Hélène suggested trying to reduce the catering costs by establishing a clear/ detailed budget with them. Sonia will ask them for a breakdown of costs in order to see where savings could be made. Insurance is also, surprisingly, not included in the price. Based on these figures it is possible that this meeting may run at a loss. In order to break even the price of membership may have to be increased. As the price of membership has not increased for several years, it was proposed to increase the membership fee from 30 to 40 Euros (still to be fully discussed).

c. 2014/ 2015 Venue and format

Antwerp was open to hosting the 2014 meeting. However, there is the possibility of organising a joint ‘Benelux’ meeting together with the Dutch Society of Human Genetics. The meeting would be held in English. Discussions had earlier been held between Robert Hofstra and Hélène, and recently with Thomy. The Board of the Dutch Society will discuss this at their next meeting. If they give a favourable response, this will be put on the agenda of a future BeSHG Board meeting.

4. DNA Day

Catheline reviewed the information available on the ESHG website. As part of the international DNA Day initiative, the ESHG organises a competition to find the best essay written by a 14-18/19 year old. From a choice of 2 essay titles, the participant must submit a 750 word essay. Some relevant supporting literature is provided on the website. As this is in English, the Board could help in translation or provide other alternatives in a native language. Participation is organised by a teacher and there can be no more than three submissions per class. Essays are encouraged to be in English but other languages are acceptable.

In order to promote DNA Day in Belgium the Board needs to distribute this information to schools and motivate teachers. Various ways of accessing teachers were discussed. It was finally decided that Sonia, Katrina and Hélène would approach their local schools in respectively Flanders, Wallonia and Brussels in order to determine the best way of advertising this initiative. This will be followed up at the next Board meeting.

5. Updates on Work Groups

The aim of having categories of recognised professionals at the European level is to harmonise medical genetics, making cross border recognition and exchange possible. The speciality of Medical Geneticists is not yet recognised in Belgium, although such recognition will apparently be legally required by the end of October 2013 as part of the EU directive for cross border health collaboration. Similarly, official/ legal recognition of clinical genetics scientists occurs in only a few countries, in others it is recognised by the professional body (equivalent to the BeSHG). This recognition is at times necessary eg for some types of accreditation. How to obtain legal status for laboratory supervisors needs to be determined. Thomy will try to find out.

a. The Work Group on Good Clinical Practice

Jenneke Van den Eynde is willing to be co-chairperson. A French speaking co-chairperson will be nominated by the IPG. The candidates are Anne Destrée, Isabelle Maystadt and Damien Lederer.

This Work Group will draw up guidelines based on International procedures. These will be submitted via the Board to the High Council, who will use these to define the Belgian priorities and subsequently submit them to the INAMI/ RIZIV.

b. The Work Group Recognition of Genetic Laboratory Supervisors

Applications are now open, as highlighted in the latest BeSHG Newsletter. The procedure can be found on the BeSHG website. The deadline for retrospective recognition is October 2012.

c. Genetic Counsellors

This statute doesn’t officially exist in Belgium although the genetics centres already have ‘genetic’ nurses, social assistants/ social nurses/ clinical psychologists/ others fulfilling this role. A preliminary information session will be held on 18th June 2012 from 9.30 to 12.30 at UZBrussel. Everyone is welcome to attend and each centre should send Thomy a list of potential attendees in order that they receive a personal invitation. Members of the Board and the Head of the 8 Departments will also receive this invitation. Following this meeting, this group will decide if and how they wish to continue.

6. Finances

Sonia will obtain from Lut the final financial report for 2011, including the balance of both the current and savings accounts, and information detailing income and expenses.

a. Bank signatures.

There is a need to organise the transfer of some of the signatories from the previous to the new Board members. Hélène and Lut will attend to the matter.

b. Support for BCGHO.

The joint meeting between the BVAC/BCGHO groups will be held on the 5th October 2012 at the Palais des Académies in Brussels. A meeting is planned for the 8th June 2012 in order to establish the modalities of the meeting. Following this, a written request for funding will be submitted to the Board.

c. Support for 5th Benelux NGS users meeting 20 June 2012

Joris Vermeesch had asked for financial support for this meeting in January but received no clear reply. He resubmitted a request for a contribution of 400 Euros, this being accepted by the Board.

After discussions the Board was favourable to providing financial support for different initiatives. However in order to avoid any future problems it was decided to:

1. Establish guidelines on what projects the Board would be willing to support.

2. Establish a maximal annual sponsorship budget, based on the current financial situation.

Thomy will draw up guidelines for discussion at a future Board meeting.

7. Varia

a. Human Variome Project.

Hélène withdrew her application for funding to the meeting.

b. Thomy distributed the text he had prepared on ‘Medical Genetics in Belgium’ which he had prepared for the June issue of the ESHG Newsletter.

c. ARSMB—KVBMG membership.

A letter had been received from this organisation proposing to manage the BeSHG (membership, etc) for a fee. The Board saw no interest in taking up this proposition.

d. Direct to Consumer testing (DTC)

In order to review DTC testing, the Superior Health Council had set up a working group, which included members from the medical genetics community. Hélène is a member of this group and informed the Board that the report would soon be published. As this was an important issue, Thomy proposed that Hélène give feedback to the Board on this report and also proposed that she looked into the possibility of organising a half day meeting dedicated to this topic. Pascale Borry, also a member of this working group, had approached Thomy to arrange a workshop with the BeSHG on this topic. Hélène indicated she would report on this subject at the second upcoming Board meeting (3 August 2012).

e. Other

Thomy had updated the BeSHG information on the ESHG website. There are currently 2 contact names, Thomy and Katrina. A third name could be added but this was not thought necessary.

8. Dates of upcoming Board meetings

Friday 8th June 2012: 12.00 - 2.00pm

Friday 3rd August 2012