More diversity needed in genomic data, NIH official says

Medicine is an inexact science, but medical professionals today are utilizing genomics – the study of genes – to more accurately predict, diagnose and treat diseases. This can lead to better success in managing and curing illnesses. But Carla Easter has found there is one deterrent.

“There is a lack of diversity in genomic data,” said Easter, PhD, Chief of the Education and Community Involvement Branch, Division of Policy Communications, and Education, National Human Genome Research Institute, one of the National Institutes of Health. “Better and more data can be collected if more people in communities are involved.”

Easter was the featured speaker at the University of Illinois Cancer Center’s Community Outreach and Engagement Seminar.

In 1990, the NIH and Department of Energy began the Human Genome Project, a 15-year plan that would develop technology for analyzing DNA, map and sequence human and other genomes – including fruit flies and mice – and study related ethical, legal and social issues, Easter said. Completed two years ahead of schedule in 2003, the sequences produced by the project covered about 99 percent of the human genome’s gene-containing regions, she said.

“Genome is just a fancy word for all your DNA,” Easter said. “Knowing about your genome helps you understand your health and supports your health decisions. Your genome contains all the instructions for you to grow throughout your lifetime. You can play an active role in keeping your genome healthy – by eating healthy foods, exercising, and avoiding things that may cause diseases.

“We are learning new things about the human genome every day.”

Easter led the development of the National Human Genome Research Institute’s Community Engagement in Genomics Working Group in 2017, whose goals are to facilitate NHGRI’s understanding of community perspectives and needs about genomics, engage and educate diverse communities about genomics, and inform the NHGRI leadership about issues relevant to its portfolio of genomics research and related programs.

Comprised of community liaisons and health advocates representing diverse populations, the group is working to achieve its goals by assessing the gaps and needs of diverse communities related to genomics and genomic medicine; develop programs and circulate tools and resources to address the identified gaps and needs; partner with NHGRI to build relationships and trust with communities, and to increase genomic literacy, among others.

Recruiting and training data science and biomedical professionals from diverse backgrounds is also of utmost importance, Easter said. While medical schools are becoming more diverse – the percentage of Asian students showed the biggest gain from 1980 to 2016, from 4 percent to more than 21 percent – white students, at 51.5 percent, remain the majority, although that number has decreased from nearly 84 percent during that time.

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