Attitudes of People with Inherited Retinal Conditions Toward Gene Editing Technology
This paper was co-authored by PaSAGE team member Kelly Ormond.
Gene editing is being studied right now. Scientists want to use this process to treat genetic conditions. It is important to listen to the views of people with genetic conditions. This is because it doesn’t make sense to develop a treatment if nobody in the community would use it. The authors of this paper talked to people with inherited retinal (eye) conditions. They wanted to know how this community feels about gene editing treatments.
This study talked to 17 people with inherited retinal conditions. The participants were asked about their experience of blindness. They were also asked about their opinions on gene editing in different scenarios. These included somatic, germline, and enhancement applications.
The participants saw potential benefits of gene editing in general. However, whether they thought it should be used for blindness depended on personal experience. People who developed blindness later in life felt more negatively about it. They tended to support gene editing for blindness more than those who viewed blindness more positively. The participants also had concerns about gene editing in general. The first concern was how to make sure potential patients knew what they were agreeing to. The second concern was how attitudes of blindness would change if gene editing became available. The third concern was if gene editing would “get rid of” blindness or other traits.
This study showed that people with inherited eye conditions have many different opinions about gene editing. These opinions are shaped by how they view blindness in their life. Many are also concerned about how gene editing is talked about and how it may impact their life.