Gene Therapy and Ethics: The Patient View - A tool for public 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) gene 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 gene therapy. This folder has been created to increase your understanding of the patient perspective on gene therapy and in particular on some of the ethical issues involved.