Gene modification therapies: views of parents of people with Down syndrome.

ABSTRACT:

Purpose

In considering gene modification technologies, the priorities of patient communities must be a central consideration. The purpose of this study is to assess views of families with Down syndrome (DS) regarding potential genome-based interventions.

Methods

We constructed an anonymous online survey for family members of people with DS. Participants were asked to agree or disagree with scenarios describing hypothetical interventions to silence or significantly alter the physical and cognitive effects of a trisomy 21, and also with scenarios depicting currently available physical interventions.

Results

All 532 respondents were parents of people with DS. For each of the five scenarios, over half said they would approve the intervention or would advise their children

SUBMITTER: Michie M 

PROVIDER: S-EPMC6309526 | biostudies-literature | 2019 Feb

REPOSITORIES: biostudies-literature