Attitudes of people with inherited retinal conditions toward gene editing technology

• Published in: Molecular genetics & genomic medicine 2019-07, Vol.7 (7), p.e00803-n/a
• Main Authors: Hoffman‐Andrews, Lily, Mazzoni, Ronit, Pacione, Michelle, Garland‐Thomson, Rosemarie, Ormond, Kelly E.
• Format: Article
• Language: English
• Subjects: Adult; Aged; Attitude; Attitude to Health; Attitudes; Bioethics; Blind people; Blindness; Blindness - congenital; Blindness - genetics; Clinical trials; CRISPR; Deafness; Disability; Ethics; Female; gene editing; Gene Editing - ethics; Gene therapy; Genetic counseling; Genetic modification; Genotype; Health Knowledge, Attitudes, Practice; Humans; Informed consent; Leber congenital amaurosis; Leber Congenital Amaurosis - genetics; Leber Congenital Amaurosis - psychology; Male; Middle Aged; Mutation; Original; Pedigree; People with disabilities; Phenotype; Qualitative analysis; Qualitative research; Retina; Retinal Diseases - genetics; Retinal Diseases - psychology; Retinitis; Retinitis pigmentosa; Retinitis Pigmentosa - genetics; Retinitis Pigmentosa - psychology; Social attitudes; Technology; United States
• ISSN: 2324-9269; 2324-9269
• DOI: 10.1002/mgg3.803

Background The views of people with genetic conditions are crucial to include in public dialogue around developing gene editing technologies. This qualitative study sought to characterize the attitudes of people with inherited retinal conditions (retinitis pigmentosa [RP] and Leber congenital amaurosis [LCA]) toward gene editing. Methods Individuals with RP (N = 9) and LCA (N = 8) participated in semi‐structured qualitative interviews about their experience with and attitudes toward blindness, and their views about gene editing technology for somatic, germline, and enhancement applications. Results Participants saw potential benefits from gene editing in general, but views about its use for retinal conditions varied and were influenced by personal perspectives on blindness. Those who felt more negatively toward blindness, particularly those with later onset blindness, were more supportive of gene editing for retinal conditions. Concerns about both germline and somatic editing included: the importance of informed consent; impacts of gene editing on social attitudes and barriers affecting blind people; and worries about “eliminating” blindness or other traits. Conclusion People with RP and LCA have diverse attitudes toward gene editing technology informed by their own lived experience with disability, and many have concerns about how the ways in which it is discussed and implemented might affect them. This qualitative study sought to characterize the attitudes of people with inherited retinal conditions (retinitis pigmentosa [RP] and Leber congenital amaurosis [LCA]) toward gene editing for these conditions. People with RP and LCA have diverse attitudes toward gene editing technology informed by their own lived experience with disability, and many have concerns about how the ways in which it is discussed and implemented might affect them.