00:32:56 Tiana Sepahpour: Welcome to ELSI Friday Forum! We are glad you will spend the hour with us. We ask that all attendees please abide by the code of conduct, which can be found here: https://elsihub.org/news/code-conduct Following the webinar will be an opportunity to continue the conversation in another Zoom meeting. Please consider joining us then at this link, which will also be sent towards the end of the hour: https://columbiacuimc.zoom.us/j/92213824621 Join our ELSI scholar directory: https://elsihub.org/form/submit-scholar Visit the ELSIhub website: https://elsihub.org/ Subscribe to our newsletter: https://elsihub.org/news-and-events/newsletter Follow us on Twitter @ELSIhub: https://twitter.com/ELSIhub and tweet your favorite moments using #ELSIFridayForum Follow us on LinkedIn: https://www.linkedin.com/company/elsihub/ 00:34:33 Tiana Sepahpour: ELSIhub Collections are essential reading lists on fundamental or emerging topics in ELSI, curated and explained by expert collection editors. Please use the link to access How Do We Diversify Human Genomics Research? curated by Alice B. Popejoy, PhD, Assistant Professor, Division of Epidemiology, Department of Public Health Sciences, University of California, Davis https://elsihub.org/collection/how-do-we-diversify-human-genomics-research 00:35:16 Tiana Sepahpour: Please use the “cc” button at the bottom of the screen to access closed captioning. Use the Q&A function to ask questions. “Like” a question in the Q&A to push it towards the top of the queue. We will post links to references in the chat and please feel free to add your own. A recording of this session and all references posted in the chat will be available on ELSIhub.org. If you have questions, please email: info@elsihub.org 00:36:04 Tiana Sepahpour: CERA & The Hastings Center Special Issue Call for Papers: Envisioning a More Just Genomics: https://elsihub.org/news/special-issue-call-papers-envisioning-more-just-genomics 00:37:03 Tiana Sepahpour: Moderator: Anna Lewis, DPhil Biography: https://ethics.harvard.edu/people/anna-lewis 00:37:52 Tiana Sepahpour: Link to “Assisted Reproductive Technology Surveillance — United States, 2018” (2022): https://www.cdc.gov/mmwr/volumes/71/ss/ss7104a1.htm 00:38:31 Tiana Sepahpour: Link to “Live Birth with or without Preimplantation Genetic Testing for Aneuploidy” (2021): https://www.nejm.org/doi/full/10.1056/NEJMoa2103613 00:39:07 Tiana Sepahpour: Link to “Genomic Prediction, Second Issue” (2021): https://assets-global.website-files.com/5f47aef619bbf2237826070e/60f019017b549b5b05dc3aef_Genomic-2021Q2.pdf 00:39:15 Tiana Sepahpour: Link to “Better Tests, Better Outcomes”: https://www.lifeview.com/index.html 00:39:46 Tiana Sepahpour: Link to “Polygenic Health Index, General Health, and Pleiotropy: Sibling Analysis and Disease Risk Reduction” (2022): https://doi.org/10.1038/s41598-022-22637-8 00:40:09 Tiana Sepahpour: Link to “Polygenic Risk Scores and Genomic Prediction: Q&A with Stephen Hsu” (2019): https://www.genengnews.com/insights/polygenic-risk-scores-and-genomic-prediction-qa-with-stephen-hsu/ 00:40:47 David Curtis: Link to "Realistic expectations are key to realising the benefits of polygenic scores" BMJ 2023 https://www.bmj.com/content/380/bmj-2022-073149 00:40:53 Tiana Sepahpour: Link to “Public views on polygenic screening of embryos” (2023): https://www.science.org/doi/abs/10.1126/science.ade1083?af=R 00:42:08 Tiana Sepahpour: Panelist: Francesca Forzano, MD, FRCP Biography: https://www.guysandstthomas.nhs.uk/our-consultants/francesca-forzano Panelist: Gabriel Lázaro-Muñoz, PhD, JD Biography: https://bioethics.hms.harvard.edu/faculty-staff/gabriel-lazaro-munoz 00:44:23 Tiana Sepahpour: Link to “Polygenic Risk Scores”: https://www.genome.gov/Health/Genomics-and-Medicine/Polygenic-risk-scores 00:45:15 Tiana Sepahpour: “Prediction Research: An Introduction” (2018): https://www.semanticscholar.org/paper/Prediction-Research-An-introduction-Janssens-Martens/861209d4a46cbb3719247cbb79fd3f3ad4fe49d3 00:45:18 David Curtis: Prof Forzano's response to Stephen Hsu just out in EJHG: https://www.nature.com/articles/s41431-022-01241-4?utm_source=ejhg_etoc&utm_medium=email&utm_campaign=toc_41431_31_3&utm_content=20230309 00:47:09 Tiana Sepahpour: Link to “Assessing agreement between different polygenic risk scores in the UK Biobank” (2022): https://doi.org/10.1038/s41598-022-17012-6 Link to “Polygenic Risk Scores Can Differ for Same Disease in Individuals, Hampering Clinical Implementation” (2022): https://www.genomeweb.com/genetic-research/polygenic-risk-scores-can-differ-same-disease-individuals-hampering-clinical#.ZAdOouzMIUo 00:48:18 Tiana Sepahpour: Link to “Responsible use of polygenic risk scores in the clinic: potential benefits, risks and gaps” (2021): https://doi.org/10.1038/s41591-021-01549-6 00:53:34 Tiana Sepahpour: Link to “The use of polygenic risk scores in pre-implantation genetic testing: an unproven, unethical practice” (2021): https://doi.org/10.1038/s41431-021-01000-x Link to “ESHRE supports the position of ESHG on embryo selection based on polygenic risk scores” (2022): https://www.eshre.eu/Guidelines-and-Legal/Position-statements/PRS 00:54:43 Tiana Sepahpour: Link to “Direct-to-consumer prenatal testing for multigenic or polygenic disorders: a position statement of the American College of Medical Genetics and Genomics (ACMG)” (2021): https://doi.org/10.1038/s41436-021-01247-1 Link to “Advisory on the Use of Polygenic Risk Scores to Screen Embryos for Adult Mental Conditions” (2021): https://ispg.net/wp-content/uploads/2021/05/2021-May-ISPG-Ethics-Advisory-Embryo-Screening.pdf Link to “Moving innovation to practice: an Ethics Committee opinion” (2021): https://www.asrm.org/globalassets/asrm/asrm-content/news-and-publications/ethics-committee-opinions/moving_innovation_to_practice-pdfmembers.pdf 00:55:34 Tiana Sepahpour: Link to “ACCE Model Process for Evaluating Genetic Tests”: https://www.cdc.gov/genomics/gtesting/acce/index.htm#:~:text=ACCE%2C%20which%20takes%20its%20name,about%20DNA%20(and%20related)%20testing 00:56:55 Tiana Sepahpour: @GLMbioethics 01:06:13 Sandra Soo-Jin Lee: Wonderful to see so many of you today. Please use the Q/A box to submit your questions. 01:10:21 David Curtis: In the first published example, five perfectly healthy embryos were discarded: https://www.frontiersin.org/articles/10.3389/fendo.2019.00845/full 01:10:22 Todd Lencz: I'd like to call everyone's attention to the following resource, which maintains a curated list of the literature in this area: polygenicembryo.org 01:10:48 Todd Lencz: https://www.polygenicembryo.org/ 01:18:37 Julia Brown: I think the second best embryo issue is already happening with embryo selection across all genetic screens — the ‘strongest’ grades are nearly always transferred first! 01:22:54 David Curtis: I think people really struggle to understand how limited is the predictive ability of PRS 01:29:08 sara gauthier: Is there any research out there ??regarding children that were not screened and then born with a genetic disorder that could have been screened for. If their parents are now having another child that they are screening for disorderesWould their parents have selected their embryo out of the mix? How does this affect them emotionally? 01:29:47 sara gauthier: Sorry, it sent before I edited the question, but looking at Social-emotional issues that may arise now, is any research being done on this? 01:31:11 Tiana Sepahpour: We hope you will consider joining us at the link below to continue the conversation: https://columbiacuimc.zoom.us/j/92213824621 We would appreciate your feedback. Please fill out our survey to discuss your experience and to make suggestions for topics and speakers: https://cumc.co1.qualtrics.com/jfe/form/SV_8dN4BPaRf5trEBo We invite you to register for our next ELSI Friday Forum - “Virtual Storytelling in ELSI Research” on April 14 at 12pm ET: https://us06web.zoom.us/webinar/register/WN_ICKlu_r-QrCz-YNhfRonuQ We invite you to browse ELSIhub Collections. ELSIhub Collections are essential reading lists on fundamental or emerging topics in ELSI, curated and explained by expert Collection Editors, often paired with ELSI trainees. https://elsihub.org/resources/collections Post-forum discussion link: https://columbiacuimc.zoom.us/j/92213824621 01:31:57 Gabriel Lázaro-Muñoz: Thanks all for being here! 01:32:04 Tiana Sepahpour: We hope you will consider joining us at the link below to continue the conversation: https://columbiacuimc.zoom.us/j/92213824621 We would appreciate your feedback. Please fill out our survey to discuss your experience and to make suggestions for topics and speakers: https://cumc.co1.qualtrics.com/jfe/form/SV_8dN4BPaRf5trEBo We invite you to register for our next ELSI Friday Forum - “Visual Storytelling in ELSI Research” on April 14 at 12pm ET: https://us06web.zoom.us/webinar/register/WN_ICKlu_r-QrCz-YNhfRonuQ We invite you to browse ELSIhub Collections. ELSIhub Collections are essential reading lists on fundamental or emerging topics in ELSI, curated and explained by expert Collection Editors, often paired with ELSI trainees. https://elsihub.org/resources/collections Post-forum discussion link: https://columbiacuimc.zoom.us/j/92213824621 01:32:05 Stacey Pereira: Great talks!