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Gene editing and the patients perspective

A new technique, CRISPR, raises high expectations of somatic gene therapy. Probably CRISPR can contribute to fast, safe and cheap treatments for inherited diseases, cancer and infections by modification in the genome of human cells. It is important to make a distinction between this development, that seems unproblematic in ethical terms, and changes in the germline in embryos, which is currently not allowed by legislation in many countries, or 'enhancement' which would imply changes of human traits, and which is not what this contribution is about.

The OECD organised a meeting in Berlin, 6-7 July 2017, on 'Gene editing for advanced therapies', and invited VSOP/EGAN amongst others. Should scientific research indicate that gene editing is safe, then it is expected that the first product for treatment of HIV/AIDS patients will be available at the European market by the end of 2018. Cells of patients would be made resistant to the virus, and given back to the patient. Potentially sickle cell disease and haemophilia will follow within a few years. Any condition that can now be treated with stem cell transplantation could in theory also be treated with somatic gene editing. At the meeting in Berlin attention was asked for the involvement of relevant parties in the societal debate. What are the points to consider? Safety, accessibility at a reasonable price, also available for very rare mutations? Patients and citizens, physicians and health insurance companies all have a role in the 'governance', apart from researchers.