Evaluating the Risks and Benefits of Genetic and Pharmacological Interventions for Down syndrome: Views of Parents
PaSAGE team members Riggan, Michie and Allyse co-authored this paper.
Scientists are studying new technologies to prevent or lessen symptoms of Down syndrome (DS). One future technology is chromosome silencing, where the extra copy of the 21st chromosome is “turned off.” When the chromosome is turned off, only the two remaining copies express genes. This results in more typical development. This treatment would be done during pregnancy (prenatally). Another future technology is pharmacotherapy. This means treating a condition with medication. The goal is to improve learning and retention in those with DS. This treatment would be done during childhood.
The authors of this study surveyed parents of people with DS. They wanted to know their opinions on these two potential treatments. They found just over half of parents felt both therapies should be available. For the prenatal treatment, support depended on the risk of miscarriage. For the treatment during childhood, support depended on how the medication would change their child’s personality. Many parents didn’t care; they just wanted to improve their child’s quality of life. Before many parents would agree to these two potential treatments, they wanted to learn more about how safe and effective they were.
This study showed that not everyone felt the same way about potential treatment for DS. Specifically, they found that parents viewed risks and benefits of each intervention differently. This shows how important it is to involve stakeholders in the development of new treatments.