Belgian Society of Human Genetics absl-vzw Date 10-08-12

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 3rd August 12.00 to 2.00pm

at the home of Helene Antoine Poirel: 23 Avenue de Woluwe Saint Lambert, 1200 Brussels

1. Apologies (Lut Van Laer, Catheline Vilain)

2. Approval of the Minutes of the previous Meeting held on 8th June 2012 - unanimously approved.

3. Follow up 2013 Meeting, Brussels

Accounts of the last meeting (March 2012, Liege) are not yet finalised. There was some confusion about the payment of some speakers expenses which will be verified by Cécile.

Paul received a list of the 2012 sponsors from Pascale Hilbert. He will send a letter to sponsors for the 2013 Meeting at the end of August. No further update on the 2013 Meeting.

4. Direct to Consumer Genetic Testing

As previously discussed, a committee was established to discuss issues arising from DTC genetic testing and to advise the authorities on whether Belgium requires appropriate legislation. Amongst others, this committee includes representatives from most of the genetic centres. The advisory document is apparently now published and Hélène will forward a copy to the Board members. A follow up committee meeting will be held in September. Hélène proposed to present a summary of this advisory committee at the next Board meeting.

5. Work Group ‘Good Clinical Practices’

The clinical practice workgroup is on hold for the moment. The High Council for Human Genetics intends to draw up the guidelines themselves.

6. BeSHG Sponsorship Policy

Following the discussions of the last Board meeting, Thomy presented a new draft (received prior to the meeting), which was accepted.

7. Feedback on ‘Genetic Counsellors’ Discussion Meeting, Brussels

Thomy and Catheline hosted this meeting which began with a presentation of the participants. At the end of the discussions, the participants felt that there was not at present any interest in formalising the role and recognition of genetic counsellors. However, the participants did not feel included in the BeSHG, they did not in general participate at the annual meetings and were ill informed with regards the occurrence of the meeting. Although no formal structure was formed, everyone wanted to maintain contact and receive relevant information and documents. The European guidelines will be posted on the BeSHG website and they will receive the Newsletter with the invitation to participate at the 2013 Meeting.

8. Feedback 4th Human Variome Project meeting, Paris

A major grant program was announced which has been funded by China for the purposes of promoting the exchange of knowledge and activities among, and between, institutions and organisations that are members, or who host members, of the Human Variome Project consortium. Grant applications must include the participation of a minimum of two HVP consortium members, each one associated with a different country. One of the countries should be a third world country. These grants could be very interesting to some Belgian Genetic centres, especially those who currently have such ongoing collaborations. Thomy will send a circular to each centre advertising this initiative.

9. Feedback op ESHG Presidents’ Meeting, Nurnberg

This meeting involved around 25 presidents of the individual European genetic societies. Main news :

The ESHG will be re-structuring to have two sections, one concerned with members, ie clinical geneticists, genetics scientists, and genetic counsellors, the other with laboratory issues (accreditation/ certification).

Membership will be opened to non-Europeans but they should have limited participation on committees.

DNA day 2012 - 151 classes participated and 266 essays were submitted and judged.

Accreditation - Ros Hastings presented accreditation of clinical geneticists. (Belgium is still one of the only countries not to have formal recognition of clinical geneticists.)

A satellite meeting/ workshop will be arranged around ‘Medical Genetics in North African countries’, prior to the ESHG Meeting in Paris from 8 to 11 June 2013.

10. Varia

a.) Feedback WG Recognition of Genetic Laboratory Supervisors - First batch of recognition certificates have been signed and have been sent out.

b.) Feedback 5th Benelux NGS Meeting, Leuven Presentation from 18 young investigators. - Winner of the BeSHG prize was Joep de Lijt, whose photo will be posted on the BeSHG website.

c.) Feedback WG BCG-HO Meeting October 2012 - The meeting website is being completed. Thomy will check with Bjorn that this event is posted on the BeSHG website

d.) Request Sarah Vergult - Poster prize 2011 use - The winner of the BeSHG 2011 meeting, Sarah Vergult, is unable to go to the ESHG meeting due to other commitments. She asked the Board if she could use the money towards the cost of going to both the Genomic Disorders meeting and the ASHG meeting. The board unanimously agreed.

e.) WG Dysmorphology – The monthly dysmorphology meetings co-organised by the 8 genetic centres are part of the BeSHG workgroup, allowing them to obtain funding for catering from the Society. However, 4 of the 8 dysmorphology meetings will in future be LOK/GLEM meetings, and as such receive funding via the RIZIV/ INAMI and subsequently precluding external sponsoring. The BeSHG will therefore only continue to cover the costs of the 4 other meetings. Thomy will write/ inform K Keymolen.

f.) Professor Peter Vanden Berghe requested support for Huret’s Atlas. This is a website cataloguing recurrent chromosome abnormalities related to cancer. Also provides several educational reviews. They have obtained EC money on the proviso that they can raise 70.000 Euro. They have contacted Haematology/ Pathology/ Genetic/ Cytogenetic societies, whose members regularly consult this site for funding. They have had a positive response from several of these, who have pledged money. This site is a precious resource but it could be improved and needs to be brought up to date and include information relevant to technical advances (arrays, mutations…). The Board agreed to pledge 5.000Euros and to see about the possibility of having some representation on their board. The BCGHO workgroup will ask their members, who are involved in the Atlas society (ARMGHM), to raise this at their next meeting.

g.) Other

- DNA day . The essay titles will be available in November. The marks obtained by the Belgian participants will be made available to the Board in order that a prize can be presented to the highest scoring essays from the different communities.

- Helene noted that the format some of the Board documents was not complete. The legal statute of the Society should appear on all documents. Katrina will ensure that this is rectified.

- Thomy distributed a poster about Rare Diseases Day on 28 February 2013. In 2012, this had consisted of a full day workshop in Brussels. The BeSHG could be involved in 2013 in some as yet to be defined way.

- Thomy received another offer from a society (VSDC) to take over the organisation of our society. This was not thought necessary.

- The High Council does not feel it necessary to have a representative of the BeSHG at their meetings. Thomy will look at the related ‘arêté royale‘ published in the Moniteur.

- Sonia drew our attention to plans which are being drawn up to create an international consent form which will give professionals access to all medical data, including genetic data. This is something people should be aware of, the Board should inform themselves of the situation.

Next meetings

September 21st 12.30 at UZ Brussels

November 16th 12.30 at UZ Brussels