The editorial in the “Mitteilungen der KV Sachsen” is a personal opinion piece by the chairman of the KV Sachsen, Dr. Klaus Heckemann, in which some facts about the growing possibilities of genomic diagnostics and targeted therapy of genetic diseases are factually misrepresented. However, this is not the reason for the statement of the Eva Luise and Horst Köhler Foundation for People with Rare Diseases. The reason for the statement is a “vision of the future” outlined by Dr. Heckemann: He suggests that in the future all women who wish to have children will be offered a complete mutation search for all known autosomal recessive hereditary serious diseases and that the risk of giving birth to a seriously ill child can be eliminated by in vitro fertilization and pre-implantation diagnostics. Dr. Heckemann adds that this procedure touches on ethical aspects, “since the use of such a possibility is undoubtedly eugenic. But in its best and most humane sense“.
We are stunned by these appalling statements from a physician and functionary in a leading position in self-governance. At the same time, we see them as a call to take a firm stand against these statements and ideas. After all, they are a slap in the face of the more than four million people in Germany who suffer from a serious rare disease and their families who deal with their fate on a daily basis. They rely on a society and a healthcare system based on solidarity to ensure that everyone gets the help they need.
As the Eva Luise and Horst Köhler Foundation for People with Rare Diseases, we appeal to everyone to oppose these statements. This editorial must not contribute to making ideas “socially acceptable” again, which we believed would never find a place in Germany. Together with many physicians, scientists and members of other health professions who have made it their mission to improve the quality of life of people with rare diseases through research and therapeutic innovation and who see their work and findings misused by what has been written, we stand firmly on the side of those in need of protection.
The opportunity to “resist the beginnings” has not yet been missed. Article 1 of our Constitution – Human dignity is inviolable – applies fully to people with rare diseases. We will continue to ensure this today and in the future.
UPDATE: On 4 September 2024, Dr. Klaus Heckemann was relieved of his duties with immediate effect at a special meeting of the Assembly of Representatives of the KV Sachsen.
