Embryonic Stem Cell Research and Therapy: Rare Disease Patients’ Perspective

• Patients in general and rare disease patients in particular, are in dire need of treatments. They are placing high expectations on ESC research. • Eurordis considers that individuals must have free choice of therapy, and that they should be free to refuse or demand treatments issued from ESC research. • Eurordis is concerned that the current debate could deprive products derived from ESC research of an EU centralised procedure offering quality, effectiveness and safety guarantees. • The EU principle of subsidiarity allows individual Member States to ban ESC research at national level. This could potentially lead to therapies being available in some States only, creating further inequities between EU citizens (by limiting patient access to potentially life saving treatments). This is contrary to the principle of free choice for individuals. • ESC research is currently performed by a number of countries representing half the world population that have a permissive or flexible policy on ESC research. Products issued from such research will eventually be made available in the EU. • Thousands of human blastocysts created by couples with fertility problems lie in the freezers of EU laboratories, only to be destroyed later. It seems illogical that ESC research is considered as murder by some, but not the destruction of such blastocysts. • The latest Eurobarometer (June 2006) shows considerable support for ESC research, provided it is tightly regulated. The same goes with the US, where a September 2005 survey found wide support for ESC research.