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Session


S. M. Fullerton1, S. J. Knight2, A. M. Gutierrez3, B. B. Biesecker4, K. A. Goddard5, G. LaMoure6, M. A. Majumder3, P. Murali1, S. Outram7, A. B. Popejoy8,9, K. Renna6, D. J. Kaufman6, L. A. Hindorff10; 1Univ. of Washington, Seattle, WA, 2Univ. of Utah, Salt Lake City, UT, 3Baylor Coll. of Med., Houston, TX, 4RTI Intl., Washington, DC, 5Kaiser Permanente Northwest, Portland, OR, 6Natl. Human Genome Res. Inst., Bethesda, MD, 7UCSF, San Francisco, CA, 8Stanford Univ., Stanford, CA, 9Univ. of California, Davis Sch. of Med., Davis, CA, 10NIH, Bethesda, MD

Background: The Clinical Sequencing Evidence-Generating Research (CSER) Consortium was initiated in 2017 with the aim of investigating the effectiveness of integrating genomic (exome or genome) sequencing into the clinical care of medically underserved individuals across diverse health care settings and disease states. At the recommendation of participant stakeholders, and in the wake of broader discussion about the impact of systemic racism and other forms of discrimination in many contexts including biomedical research, the consortium agreed to adopt a formal Diversity and Inclusion Statement. Here we describe the final statement ratified by CSER and the process by which the statement was developed, reviewed, revised, and adopted for use in consortium publications and presentations. Methods: The suggestion to adopt a consortium-wide Diversity and Inclusion statement was brought to a Steering Committee meeting in the summer of 2020. Following discussion with CSER principal investigators and workgroup chairs, an ad hoc group of interested CSER investigators, with representation from all eight CSER sites and the NHGRI, was convened to draft a statement for adoption and use by the consortium. A preliminary draft was presented to scientific investigators and a group of patient-participant stakeholders for feedback. The statement was revised further and circulated to CSER sites for final review before formal ratification at a Steering Committee meeting. The statement was also translated into Spanish to make it accessible to Spanish-preferring stakeholders. Results: The iterative drafting, review, and revision process resulted in a brief (approximately 100 word) plain language statement that describes CSER’s commitment to understanding how genes impact disease and reducing barriers to genetic services among people who are discriminated against, marginalized, and medically underserved. The statement addresses stakeholder engagement and workforce diversity, as well as responsible analysis and reporting. While acknowledging that much work needs to be done to achieve a just and equitable health care future, the statement emphasizes CSER’s commitment to creating genomic knowledge that will benefit people of all backgrounds. Conclusions: Although intended primarily to guide CSER investigators and stakeholders in the final stage of their collective work together, we hope that the statement can inform the work of the clinical translational genomics research community moving forward.
Session Type
Poster Presentations
Topic
Genetic Counseling‚ ELSI‚ Education‚ and Health Services Research