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S. Kraft1,2, J. T. Bensen3, K. E. Donohue Bonini4, L. A. Hindorff5, D. J. Kaufman6, K. E. Renna7, J. O. Robinson8, H. Russell9, N. Sahin-Hodoglugil10, M. Waltz11, J. M. Zepp12, S. J. Knight13; 1Seattle Children's Res. Inst., Seattle, WA, 2Univ. of Washington Sch. of Med., Seattle, WA, 3Univ North Carolina at Chaper Hill, Chapel Hill, NC, 4Inst. for Genomic Hlth., Icahn Sch. of Med. at Mt. Sinai, New York City, NY, 5NIH, Bethesda, MD, 6NIH - NHGRI, Bethesda, MD, 7Div. of Genomic Med., Natl. Human Genome Res. Inst., Bethesda, MD, 8Baylor Coll. Med., Houston, TX, 9Dept. of Pediatrics Oncology, Baylor Coll. of Med., Houston, TX, 10Inst. for Human Genetics, Univ. of California-San Francisco, San Francisco, CA, 11Univ. of North Carolina, Chapel Hill, Chapel Hill, NC, 12Dept. of Translational and Applied Genomics, Ctr. for Hlth.Res., Kaiser Permanente Northwest, Portland, OR, 13Univ. of Utah, Salt Lake City, UT

The COVID-19 pandemic has led to significant changes in healthcare practices and priorities and therefore has had a major impact on genomic medicine research. Research studies have faced challenges stemming from a wide range of clinical and research factors including new procedures and policies for in-person visits, the rapid implementation of telehealth and other remote procedures, and changing priorities for participants, clinicians, and research team members. Further, multi-site projects and research consortia have had to navigate variation between institutional approaches. These challenges have affected all stages of genomic medicine research—from recruitment and consent through results disclosure and clinical follow-up. These challenges to research participation may be particularly burdensome to participants from historically marginalized racial, ethnic, and socioeconomic groups who been disproportionately impacted by COVID-19, continuing the pattern of long-standing barriers to participation in genomic research.
This presentation will describe the experience of six genomic medicine studies across ten states within the Clinical Sequencing Evidence-Generating Research (CSER) consortium as they navigated the COVID-19 pandemic, highlighting challenges faced, strategies for overcoming these challenges, and lessons learned that may inform future research operations. CSER is an NIH-funded research consortium studying the integration of genome sequencing into clinical care for diverse and medically underserved individuals. We interviewed and surveyed representatives of the six extramural CSER projects at multiple time points during 2020 and 2021. Using a descriptive content analysis approach, we identified two overarching areas in which projects faced particularly impactful challenges and saw opportunities for future improvement: (1) participant recruitment, enrollment, and engagement; and (2) the transition to telehealth and other remote research procedures. In this presentation, we will describe how projects navigated these challenges throughout the COVID-19 pandemic, with a focus on ethical considerations related to the evolving clinical-research boundary and access to genomic services for medically underserved patients. We will discuss key lessons learned to advance equitable genomic medicine research moving forward.
Session Type
Poster Presentations
Genetic Counseling‚ ELSI‚ Education‚ and Health Services Research