Inclusivity, Diversity, Equity, and Access in Genomic Research
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Our goal is to address disparities in health-related research, especially as it affects historically marginalized communities as defined by race, ethnicity, and/or socioeconomic status. To rectify this inequality, our team will collaborate with participating communities to co-design a series of interrelated research programs focused on unique populations. The shared goal will be to empower these communities with the resulting knowledge and intellectual property, ensuring that they directly benefit from the actionable discoveries and have control of the genomic data.
Your support will allow our researchers to work towards ensuring underrepresented groups are more widely included in genomic research, so they can benefit from the discoveries and innovation by JCVI and other institutions.
Dr. Venter and his teams have been dedicated to advancing precision medicine for more than two decades. This advancement relies upon accelerated discovery pipelines driven by the generation, integration, analysis, and interpretation of multimodal clinical and multi-omics data. However, 95% of genomic studies of disease are from people of European descent. Most of the remaining five percent is from people of Asian (2.9%), African (0.14%), and Hispanic (0.3%) heritage. The remaining fractional percent represents all other ethnic groups, including Indigenous communities (e.g., Native Americans and Native Hawaiians).
The continued exclusion of historically marginalized communities as research participants reinforces systematic bias in our healthcare systems and negatively impacts our ability to deliver predictive, preventative, and personalized precision medicine. This lack of data introduces systematic bias in genomic research and clinical trials, which obstructs the ability to generalize results. Underrepresented groups are therefore prevented from fully benefiting from scientific discoveries and biomedical innovation.