Research in the Field of Down Syndrome: Impact, Continuing Need, and Possible Risks from the New Eugenics

Abstract

AbstractResearch in the field of Down syndrome is under threat. There are two issues behind this threat: first availability of research funding could be limited by the perception that Down syndrome has become a rare condition. The second is that some believe the important work on Down syndrome is complete. In this commentary, the implications of the “new eugenics” on Down syndrome research are discussed, through reflecting on the impact of research arising from the 40 year Down Syndrome Research Program at The University of Queensland and other studies. This body of research has led to remarkable improvements in the quality of life of individuals with Down syndrome and those around them. The current context, particularly in the time of widespread availability of prenatal screening, gives a renewed imperative for research to improve the broader understanding of disability in the community enabling informed decisions at critical points in time. There are at least two potential benefits for continuing research on Down syndrome: for the individual and family; and for society in general. When a baby with Down syndrome is conceived, what might have been viewed as a tragedy may be seen very differently by those with lived experience. Understanding that lived experience and sharing the findings is the work of researchers in the field of Down syndrome, and there is much more work to be done.