Most women who are carriers of X-linked inherited retinal diseases (IRDs) experience negative emotions about their child’s vision and their own vision, according to a study published in Clinical Genetics. Lauren Ayton, PhD, BOptom, and colleagues examined experiences with genetic testing, emotions related to being a carrier of an X-linked IRD, and knowledge of genetics among 228 women (mean age, 51). Most felt concerned (91%), anxious (89%), or guilty (71%) about their child’s vision, and more than half (52%) also felt anxious about their own vision. Participants agreed that their eyecare clinician and general practitioner helped them understand their condition (63%), although few carriers had received psychologic counseling (9%) or family planning advice (5%). Most respondents (78%) felt that gene therapy should be available to carriers.
