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 u...
Saved in:
| Main Authors: | , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Cambridge University Press
2025-04-01
|
| Series: | Journal of Clinical and Translational Science |
| Online Access: | https://www.cambridge.org/core/product/identifier/S2059866124010586/type/journal_article |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1850097896762900480 |
|---|---|
| author | Jenny McKenzie Sarah Hartz Chris Gurnett Dustin Baldridge Kevin Bowling Jorge Luis Granadillo De Jessica Mozersky Laura Bierut Patricia Dickson |
| author_facet | Jenny McKenzie Sarah Hartz Chris Gurnett Dustin Baldridge Kevin Bowling Jorge Luis Granadillo De Jessica Mozersky Laura Bierut Patricia Dickson |
| author_sort | Jenny McKenzie |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-cae7d1e7bf3f4e5ca27bf0fafdb7b00e |
| institution | DOAJ |
| issn | 2059-8661 |
| language | English |
| publishDate | 2025-04-01 |
| publisher | Cambridge University Press |
| record_format | Article |
| series | Journal of Clinical and Translational Science |
| spelling | doaj-art-cae7d1e7bf3f4e5ca27bf0fafdb7b00e2025-08-20T02:40:51ZengCambridge University PressJournal of Clinical and Translational Science2059-86612025-04-01913713710.1017/cts.2024.1058465 Genomic return of research service core with the precision health function of ICTSJenny McKenzie0Sarah Hartz1Chris Gurnett2Dustin Baldridge3Kevin Bowling4Jorge Luis Granadillo De5Jessica Mozersky6Laura Bierut7Patricia Dickson8Luque, Washington University in St. LouisLuque, Washington University in St. LouisLuque, Washington University in St. LouisLuque, Washington University in St. LouisLuque, Washington University in St. LouisLuque, Washington University in St. LouisLuque, Washington University in St. LouisLuque, Washington University in St. LouisLuque, Washington University in St. LouisObjectives/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.https://www.cambridge.org/core/product/identifier/S2059866124010586/type/journal_article |
| spellingShingle | Jenny McKenzie Sarah Hartz Chris Gurnett Dustin Baldridge Kevin Bowling Jorge Luis Granadillo De Jessica Mozersky Laura Bierut Patricia Dickson 465 Genomic return of research service core with the precision health function of ICTS Journal of Clinical and Translational Science |
| title | 465 Genomic return of research service core with the precision health function of ICTS |
| title_full | 465 Genomic return of research service core with the precision health function of ICTS |
| title_fullStr | 465 Genomic return of research service core with the precision health function of ICTS |
| title_full_unstemmed | 465 Genomic return of research service core with the precision health function of ICTS |
| title_short | 465 Genomic return of research service core with the precision health function of ICTS |
| title_sort | 465 genomic return of research service core with the precision health function of icts |
| url | https://www.cambridge.org/core/product/identifier/S2059866124010586/type/journal_article |
| work_keys_str_mv | AT jennymckenzie 465genomicreturnofresearchservicecorewiththeprecisionhealthfunctionoficts AT sarahhartz 465genomicreturnofresearchservicecorewiththeprecisionhealthfunctionoficts AT chrisgurnett 465genomicreturnofresearchservicecorewiththeprecisionhealthfunctionoficts AT dustinbaldridge 465genomicreturnofresearchservicecorewiththeprecisionhealthfunctionoficts AT kevinbowling 465genomicreturnofresearchservicecorewiththeprecisionhealthfunctionoficts AT jorgeluisgranadillode 465genomicreturnofresearchservicecorewiththeprecisionhealthfunctionoficts AT jessicamozersky 465genomicreturnofresearchservicecorewiththeprecisionhealthfunctionoficts AT laurabierut 465genomicreturnofresearchservicecorewiththeprecisionhealthfunctionoficts AT patriciadickson 465genomicreturnofresearchservicecorewiththeprecisionhealthfunctionoficts |