Dear ESHG members,

The Professional and Public Policy Committee (PPPC) and the Patenting and Licensing Committee (PLC), with the help of experts, have prepared a Draft Background Document on “PATENTING AND LICENSING IN GENETIC TESTING - Ethical, Legal and Social Issues”.

This work was started upon request by the President and the Board of the ESHG. After an initiatory meeting in November 2005 in Paris, and a workshop in November 2006 in Leuven, a document was prepared that would comprehensively review the background on patenting and licensing, and the current situation with a focus on genetic, diagnostic testing. During the workshops, external experts were invited. They were asked for advise, and they have subsequently also commented on the document.

This background document (and the Appendix A) is now posted on the ESHG website for discussion among the ESHG members. It will eventually be formally published in the European Journal of Human Genetics.

The discussions and the background document have served as a basis for the generation of recommendations, by the PPPC and PLC members. These recommendations have been submitted to the Board for approval. They will be published in due course.

The work was initiated after the Myriad case had stirred the genetic community. The European opposition against the BRCA patents will soon be concluded, as the hearings for the appeals will take place in the fall. In the mean time, the fact that Michael Crichton has included a strong statement against gene patenting in his most recent thriller “Next” has fuelled the public debate, also in the US. Hence, we believe that – even if it took us more that 2 years to finish it - the document arrives right on time. By issuing recommendations on behalf of the largest professional organisation for geneticists in Europe, the ESHG will be in a position to actively engage in the international discussions.

We hereby invite all members to comment on the content of the document. We welcome comments and suggestion until the end of June 2007. You can email them to Gert Matthijs (gert.matthijs@med.kuleuven.be) and Ségolène Aymé (ayme@orpha.net).

Thank you for your collaboration.

On behalf of the Committees,