Clinical trials for fetal surgery and gene therapy interventions in fetuses identified as having trisomy 21 (Down syndrome) have shown increasing success in human and animal models. These interventions vary from physical intercessions, such as cardiac repairs, to attempts at cognitive improvement, including retention and learning ability. However, these interventions have been controversial among family members and individuals living with Down syndrome. In particular, community members have argued that attempts to intervene in the natural progression of Down syndrome contravene efforts to encourage acceptance and support of individuals with Down syndrome.METHODS:
We conducted a nation-wide, online survey of parents of individuals with Down syndrome about their opinions and willingness to accept prenatal interventions in pregnancies with Down syndrome.RESULTS:
Parents were sharply divided on the acceptability of fetal interventions in pregnancies with Down syndrome. Parents expressed conflicts between the desire to give children every possible opportunity and the need and willingness to accept their children as they were and as complete individuals in their own right. A significant percentage reported that they would refuse prenatal gene therapy for potential cognitive intervention in pregnancies with Down syndrome.CONCLUSION:
Significant investment is ongoing in the detection of and intervention in pregnancies affected by aneuploidies such as Down syndrome. This study emphasizes the need to include broader stakeholder populations, including families of existing individuals, in the development and translation of such therapies. Significant rejection from patient advocate populations may result from a lack of engagement.