ASGCT Statement on DIY Gene Therapy

As the largest professional society representing gene and cell therapy in the world, ASGCT does not support the practice of unregulated gene therapies because such procedures are potentially dangerous and highly unlikely to provide therapeutic benefit. 

ASGCT understands and profoundly sympathizes with the desperation that patients can feel when confronted with dire clinical prognoses. However, ASGCT strongly discourages individuals from administering or seeking out unregulated or “do-it-yourself” gene therapies. The field of gene therapy has been developing for more than 30 years with the goal of improving the quality of life of patients with serious diseases through proven, safe, and effective treatments derived from rigorous scientific and clinical research.

The advances in the field to date are the result of the combined efforts of a large community of people, including patients and caretakers, over an extended time frame. While the field of gene therapy has overcome some of the many roadblocks inherent in developing new medical technologies, thanks to the efforts of many such individuals and groups, extensive further clinical research and testing may be required to demonstrate the safety and effectiveness of many proposed gene therapy methods.

For individuals interested in seeking to participate in specific gene therapy clinical trials, information regarding new and ongoing trials around the world can be found at clinicaltrials.gov.  

Patient advocacy groups are a valuable resource to learn about patient rights, representation, education, and public health policies. We encourage those interested to read our Patient Resources and Helpful Websites sections on ASGCT.org for more information.