Patient attitudes to genome editing for prevention of heritable disorders
Researchers at University College London are conducting a survey on attitudes and beliefs surrounding germline genome editing. This is a controversial area, but much discussion to date has focused on the views of scientists, policymakers and the general public.
However, we are particularly interested in the views of rare disease communities, as we believe that people in these communities often have prior knowledge of reproductive technologies (such as preimplantation genetic diagnosis) and are often very well informed about new technologies.
The survey can be completed online here, and should take around 12 minutes. Please share this link with your community.
The survey explores different aspects of genome editing technology, as well as applications of this technology in a medical setting for the treatment of heritable disease. The study alsos explore the attitudes of people with experience of heritable diseases towards the introduction of genome editing in embryos, for correction of mutations.
We are looking for responses from a variety of people within rare disease communities - those affected, and also their family members. Additionally, anyone who is involved in a rare disease community but does not have an affected family member is also welcome to respond.
Respondents should be aged 18 or over.