News & Events

Report launch 'Genome editing : the patient perspective'

Last Reviewed 23/11/2016

By Mariana Campos

Today we publish our new report Genome editing technologies: the patient perspective. Our report shows that patients and families of those most likely to benefit from genome editing technologies are overwhelmingly positive about scientists pursuing this research. The great majority of patients feels that the future of genome editing technologies offers more potential benefits than risks, if tightly regulated and used in the treatment of medical conditions.

We asked over 150 patients, family members and carers to consider a variety of scenarios in which genome editing could be applied and give their perspectives on the ethical use and regulation of genome editing technologies in these situations. 

What did we find?

We found that patients overwhelmingly support the use of genome editing technologies in research, where that research is focused on treating medical conditions.

As with any other innovative technology, patients want a proper regulatory framework that draws a definitive line between the treatment or cure of serious conditions and the enhancement or alteration of the physical or cognitive attributes of healthy people.

  • Patients affected by a rare genetic condition welcome the use of genome editing technologies in research and clinical settings;
  • Patients are interested in genome editing technologies, and would like to learn more about them;
  • Patients are clear that use of the technology should be limited to treating medical conditions and not for the enhancement or alteration of physical or cognitive attributes of healthy people;
  • Patients believe the benefits of this new and innovative technology far outweighs any potential risks;
  • Patients call for a multiple stakeholder approach to regulatory decisions to ensure ethical use of genome editing technologies, and want to be involved in this process;

If you want to know more about this work please contact our Public Engagement Manager, Mariana Campos (mariana.campos@geneticalliance.org.uk).

You can also get involved in our new 'Talking about genome editing' project.

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