465 Genomic return of research service core with the precision health function of ICTS

Objectives/Goals: Returning genetic research results to participants can improve community engagement and enhance health equity. Providing research investigators with a convenient and cost-effective pathway for returning genetic findings, along with ensuring the necessary criteria for validity and utility, may reduce the barriers to returning results. Methods/Study Population: The ICTS Precision Health Genomic Return of Research Service Core (ICTS PH gROR) developed a process of returning genetic findings to participants who have indicated their preference to be notified of any findings that may impact their health. The service includes returning primary findings (actionable results discovered as part of the Investigator’s approved IRB study) and/or secondary findings [clinically actionable genes by the American College of Medical Genetic and Genomics (ACMG)]. Participants with positive findings will receive a written report, generated by a board-certified clinician specializing in genetics or molecular genetic pathology. A visit with a genetic counselor provides additional resources and guidance on the identified health risks. Results/Anticipated Results: Centralizing a service for the return of genetic results will ensure best-practices and minimize the burden. By offering results at no cost to the participant or their family, the service promotes accessibility and removes financial barriers that could otherwise prevent individuals from benefiting from genetic insights. Furthermore, by involving expert oversight committees and genetic counselors in the process, participants will receive accurate information and appropriate guidance, enhancing their understanding of the results and empowering them to address any potential health risks. Subsidizing the service with the CTSA grant keeps the costs predictable and manageable for investigators. Discussion/Significance of Impact: This approach recognizes the importance of informed consent, ethical considerations, and the potential social implications associated with genetic findings. Through open communication, participants are actively involved in the decision-making process and have the opportunity to seek further resources and support.

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Publication Details

Journal
Journal of Clinical and Translational Science
Published
2025-03-25
DOI
https://doi.org/10.1017/cts.2024.1058
Primary Topic
Biomedical and Engineering Education
Type
article
Field-Weighted Citation Impact
0.00
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article

465 Genomic return of research service core with the precision health function of ICTS

Patricia Dickson, Jessica Mozersky, Sarah M. Hartz, Kevin M. Bowling et al.
1 links
Journal of Clinical and Translational Science
Biomedical and Engineering Education
article

465 Genomic return of research service core with the precision health function of ICTS

Patricia Dickson, Jessica Mozersky, Sarah M. Hartz, Kevin M. Bowling, J. McKenzie, Jean–Marie De Koninck, Dustin Baldridge, Laura J. Bierut, Chris Gurnett
article en

Abstract

Objectives/Goals: Returning genetic research results to participants can improve community engagement and enhance health equity. Providing research investigators with a convenient and cost-effective pathway for returning genetic findings, along with ensuring the necessary criteria for validity and utility, may reduce the barriers to returning results. Methods/Study Population: The ICTS Precision Health Genomic Return of Research Service Core (ICTS PH gROR) developed a process of returning genetic findings to participants who have indicated their preference to be notified of any findings that may impact their health. The service includes returning primary findings (actionable results discovered as part of the Investigator’s approved IRB study) and/or secondary findings [clinically actionable genes by the American College of Medical Genetic and Genomics (ACMG)]. Participants with positive findings will receive a written report, generated by a board-certified clinician specializing in genetics or molecular genetic pathology. A visit with a genetic counselor provides additional resources and guidance on the identified health risks. Results/Anticipated Results: Centralizing a service for the return of genetic results will ensure best-practices and minimize the burden. By offering results at no cost to the participant or their family, the service promotes accessibility and removes financial barriers that could otherwise prevent individuals from benefiting from genetic insights. Furthermore, by involving expert oversight committees and genetic counselors in the process, participants will receive accurate information and appropriate guidance, enhancing their understanding of the results and empowering them to address any potential health risks. Subsidizing the service with the CTSA grant keeps the costs predictable and manageable for investigators. Discussion/Significance of Impact: This approach recognizes the importance of informed consent, ethical considerations, and the potential social implications associated with genetic findings. Through open communication, participants are actively involved in the decision-making process and have the opportunity to seek further resources and support.

Journal of Clinical and Translational ScienceVol. 9(s1)
Washington University in St. Louis (US)
Openalex Percentile: Top 95%
Biomedical and Engineering Education
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