Gene modification: Views of parents of people with Down syndrome

Published (online ahead of print) June 2018

Summary: 

To assess views of families with Down syndrome (DS) regarding potential genome-based interventions, we constructed an anonymous online survey for family members of people with DS. The 532 respondents, all parents of people with DS, responded to hypothetical prenatal and pediatric cognitive interventions. Their responses were significantly affected by their assessments of the impact of DS on their children’s and their families’ lives. Future interventions to address genetic conditions will impact patient communities and cannot succeed without their input and support. While many parents of people with DS indicated approval for hypothetical genetic therapies, these results indicate a need for continuing dialogue about benefits and drawbacks of gene modification technologies.

Citation and link: