Views of reproductive genetic carrier screening participants regarding screening for genes associated with non‐syndromic hearing loss

Objective Reproductive genetic carrier screening (RGCS) panels often include genes associated with non‐syndromic hearing loss (NSHL) despite a lack of evidence of acceptability. Although some couples take steps to avoid having a child who is deaf, there are effective interventions for children who are deaf. There is no consensus whether deafness is considered a disabling condition. Method This study explored views of people who had RGCS, without genes for NSHL, about this topic. Online surveys were sent to 2186 people who had a low chance RGCS result and 655 completed the survey (participation rate 30%). Results Sixty‐three percent ( N  = 412) think deafness is a serious health condition. The majority agreed (60%, N  = 391) that with support (i.e. hearing aids/cochlear implants) deafness is a minor condition in children. Most (84%, N  = 545) agreed genes for NSHL should be included in RGCS. Thirty‐five percent ( N  = 231) indicated they would make different reproductive decisions if they had an increased chance of having a child born deaf; 31% would not change their reproductive plans and 34% were unsure what they would do. Conclusion While the majority support inclusion of genes associated with NSHL in RGCS, there was uncertainty about the severity of deafness as a health condition and there was no consensus on whether it is a health condition that warrants changing reproductive decisions.