With the accelerating growth of genetic medicine and its increasing value in developing new tools of precision medicine, it is increasingly important that all segments of the population are adequately represented in genetic research. The need for broader representation of population subgroups has long been recognized, and some steps have been taken to address the issue, but large genetic databases used for research are still heavily skewed toward European populations. To explore trends over time, we conducted a systematic review of all genetic research published on Alzheimer’s disease over the past 20 years and created a dataset with demographic information on research subjects used in those studies. The analysis confirmed the persistence of under-representation and identified factors seen in those studies that have greater reported diversity. The presentation will also present preliminary findings from a series of semi-structured interviews with genetic researchers concerning causes of skewed representation and possible approaches to achieving broader diversity.
