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Gene Therapy and Ethics: The Patient View - A tool for patients dialoque

For some years now, gene therapy has been seen as a great promise for the treatment of several serious diseases. In particular, it has been seen as a route for the treatment of genetic disorders. Despite initial optimism and several promising early results, gene therapy has not yet delivered as many clinically available treatments as expected. However, the number of clinical trials for diseases open to gene therapy has increased rapidly. Most of these (potential) products are for cancers, with some of the most successful ones in the area of genetic disorders. For example, in the field of primary immunodeficiencies, gene therapy has already been shown to be a life-saving, life-extending treatment leading to dramatic improvements in health and quality of life. This gives substantial hope for future progress of treatment of many other genetic conditions. Patients and patient organisations are amongst the keenest advocates for research and development in gene therapy. Their benefit is not in getting a scientific degree or title, earning money or even being on the news. Their benefit is in improving health and overcoming a life-threatening disease, in cure rather than care. Gene therapy has the potential to make a gene medicine possible and that potential is the drive for patients to promote and support gene therapy. When it comes down to application of new insights and therapies, ethical issues start playing an important role. In particular for gene therapy that influences the basis of life: the DNA. Ethics come into view for example, when working out the necessary safety protocols, clinical trial setups and inclusion criteria of patients for research and treatment. This brochure aims to support dialogue within patients’ communities on ethical questions related to gene therapy clinical trials.

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