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The Forefront of Genomics: ELSI and NHGRI’s 2030 Strategic Vision

After two years of planning, the NHGRI released its 2030 “Strategic vision for improving human health at The Forefront of Genomics.” published in Nature on October 28, 2020. Acknowledging the widespread adoption of genomics into mainstream practices in science, healthcare and public health, the strategic vision redefines the role of NHGRI to stewardship of a broadly disseminated genomic enterprise. And from “Guiding Principles and Values” to “Bold Predictions,” the strategic vision outlines aspirations and challenges for research on ethical, legal, and social implications of genomics (ELSI). 

Noting that many of the principles and values have been informed by the ELSI research that has taken place over the past decades, the strategic vision speaks specifically to the priorities of ELSI research in the coming decade. These include investigating issues related to legal boundaries, study governance, data control, privacy, and consent in implementation of genomic medicine. The plan also highlights the importance of examining ELSI issues in the expansion of genomics in non-medical realms and the implications of studying genetic associations with bio-behavioral traits, such as intelligence, sexual behavior, social status and educational attainment. Machine learning and artificial intelligence will also be a focus of ELSI research. 

The strategic plan emphasizes the need for training a diverse workforce to address specific challenges such as population diversity, data collection strategies and standards and using multidisciplinary approaches to mitigate gaps, limitations, and biases in data and addressing the concerns of the patients, participants, and groups.

Among the ten “Bold Predictions” for 2030, the strategic vision includes two that speak directly to ELSI research.  Prediction #4 states that “research in human genomics will have moved beyond population descriptors based on historic social constructs such as race;” and #9 that “individuals from ancestrally diverse backgrounds will benefit equitably from advances in human genomics.”

Bold predictions, indeed. The strategic plan underscores the importance of engagement on genetics and justice in the coming decade for ELSI research and researchers. 

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