ITPI: The Significance of Inclusion in Clinical Trials and Medical Research Databases

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Our colleagues at the Israel Tech Policy Institute (ITPI) have published a thoughtful post on the significance of diversity and inclusion in clinical trials and health and medical research databases.

They discuss the imperative of being represented in data, for one’s existence to be recognized and considered. When such data is the building block for cure, therapy, and wellness development – representation carries consequences for one’s health prospects. Accordingly, absence from clinical data and health datasets used for health and medical research, entails a lack of representativeness and a lack of diversity in research participants. This is known to have medical and social effects on individuals and communities alike.

The diversity of populations in developed countries (where most medical research is being conducted) that came with global migration movements and the resulting demographic changes, is not faithfully reflected in the composition of participants in clinical trials and in biomedical databases. To date, the majority of participants in clinical trials and medical databases are Caucasians – mostly males of European descent. It is estimated that 78% of the genetic and genomic information available today originates from this population, although the overall proportion of Europeans and their descendants in the world population is barely 16%.

You can read the full analysis on the ITPI blog.

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