12:01:32 From David Lamb : Welcome to the second ELSI Journal Club! 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 Link to today’s featured article, “Parents’ Perceptions of the Utility of Genetic Testing in the NICU” published in Genetics in Medicine: https://www.gimjournal.org/article/S1098-3600(25)00040-1/fulltext 12:01:48 From David Lamb : Please find a list of resources provided by our discussant on ELSIhub here: https://elsihub.org/news/may-2025-elsi-journal-club-resources Follow us on BlueSky @elsihub.bsky.social: https://bsky.app/profile/elsihub.bsky.social and tag us with the hashtag #ELSIJournalClub 12:02:19 From David Lamb : If you wish to use Closed Captioning, please turn on (CC) at the bottom of your screen. Please note that links to most of the information referenced today, including speaker and moderator biographies will be put in the chat. You are also welcome to share your own resources on our topic there.  We encourage your questions, which you should submit using the Q&A button, which you will find at the bottom of your screen. In the Q&A box, you can register your enthusiasm for a question and elevate it up the list by using the UPVOTE button.   In the Chat, we will post links to resources referenced in today’s discussion and a resources list will be available on ELSIhub following the Forum. If you need assistance at any point, please email info@elsihub.org  at any time. 12:02:49 From David Lamb : Stacey Pereira, PhD is an associate professor in the Center for Medical Ethics and Health Policy. Her research focuses on social and ethical issues in genomics, with particular emphasis on the impact of integrating genomics into the clinical care of different populations, including newborns, healthy adults, and military personnel. She also has several projects exploring the use of polygenic risk scores across a variety of contexts, including clinical care of cardiology patients, pre-implantation embryo screening, and child and adolescent psychiatry. Additional research interests include issues related to banking, sharing, and research use of human biospecimens. Link to Stacy Periera’s biography: https://www.bcm.edu/people-search/stacey-pereira-28464 12:03:31 From David Lamb : To propose a short response to today’s featured manuscript for publication in Genetics in Medicine, email 1 - 3 sentences that describe your perspective to Deanne Dolan ddolan@stanford.edu by June 16, 2025. These will be reviewed by the ELSI section editors at GiM and one will be recommended to submit a Letter to the Editor. Acceptance and publication are contingent upon peer review, editorial review, and revisions. 12:03:49 From David Lamb : Moderator: Josephine Johnston, JD works on a variety of ethical, legal, and policy issues in medicine and science, with a particular focus on the implications of emerging technologies in human reproduction, psychiatry, genetics, and neuroscience. A New Zealand-trained lawyer with a master’s degree in bioethics and health law from the University of Otago, Josephine worked as a grant-funded bioethics researcher in North America for twenty years. She’s held research positions at The Hastings Center, Dalhousie University in Canada, and the University of Minnesota, USA, and taught bioethics and health law at Columbia University in New York. She has also worked as a lawyer in both New Zealand and Germany.  Link to Josephine Johnston’s biography:  https://www.otago.ac.nz/bioethics/people/academic/profile?id=3417 12:04:19 From David Lamb : Featured Author:  Katharine Press Callahan, MD, MSME, is a neonatologist and ethicist at Children’s Hospital of Philadelphia. Her research aims to improve the ways in which we manage genetic information, and other complex medical information, to maximize benefit for children and their families. Dr. Callahan’s research focuses on how neonatologists and parents use genetic information to make medical decisions and conceptualize patients’ futures. This focus emerges at the intersection of her work as a neonatologist and ethicist and her longstanding interest in the integration of genetic information into complex medical practice. In residency, she began to explore the limitations of genetic prognostication through the lens of Down syndrome. Link to Katharine Press Callahan’s biography: https://www.research.chop.edu/people/katharine-press-callahan 12:04:46 From David Lamb : Jessica Ezzell Hunter, PhD is a genetic epidemiologist whose work focuses on the impact of genomic variation on health outcomes. She has led and collaborated on numerous studies and consortiums to increase the identification of and improve health outcomes in individuals with hereditary cancer syndromes, genetic intellectual and developmental disability syndromes, and other complex genetic conditions. She has extensive experience in characterizing health outcomes with complex etiology, including gene and environment interactions, and elucidating the molecular etiology of health outcomes in individuals with genetic conditions involving genomic and epigenomic factors. She also works to ensure access to genetic services, including increased access to genetic risk assessment and genetic testing. Link to Jessica Hunter’s biography: https://www.rti.org/expert/jessica-ezzell-hunter 12:05:46 From David Lamb : Please find a list of resources provided by our discussant on ELSIhub here: https://elsihub.org/news/may-2025-elsi-journal-club-resources 12:13:38 From David Lamb : Link to “Genomic sequencing in diverse and underserved pediatric populations: Parent perspectives on understanding, uncertainty, psychosocial impact, and personal utility of results”: https://pubmed.ncbi.nlm.nih.gov/39846247/ 12:14:42 From David Lamb : Link to “Parents' perceptions of the utility of genetic testing in the NICU”: https://pubmed.ncbi.nlm.nih.gov/39987490/ 12:14:49 From ASL Interpreter-Felix (he/him) To info@elsihub.org(privately) : Can you spotlight me? 12:19:38 From Grace Morris : If you cannot see the Q&A button, click the button above “More” with the eclipses in a circle. 12:26:24 From andrea’s iPhone (7) : Who does the testing consent at CHOP? 12:28:02 From Callistus Akinleye : Callistus AKINLEYE Department of Community Medicine Osun State University Osogbo Nigeria email address callistus.akinleye@uniosun.edu.ng 12:28:19 From info@elsihub.org : Replying to "Who does the testing..." Thank you for your question. Please submit your questions using the Q&A function so that our panelists can see them. 12:44:30 From ASL Interpreter-Felix (he/him) To info@elsihub.org(privately) : Can you spotlight me please? 12:58:32 From Katharine Press Callahan : here’s my email— feel free to reach out if you have any other questions or just want to discuss ideas: callahankp@chop.edu 13:00:26 From David Lamb : Link to register for the next ELSI Friday Forum on June 13th:  https://us06web.zoom.us/meeting/register/JXFdHHhATX2sZfAq6d9YKQ Link to submit an ELSI Shoutout:  https://docs.google.com/forms/d/e/1FAIpQLSdJculh5l2LIbDfXwefWWEdmurUnnuxOqMIy-4utRpNN68R6A/viewform 13:01:20 From David Lamb : Visit the ELSIhub website: https://elsihub.org/ Join our ELSI scholar directory: https://elsihub.org/form/submit-scholar Subscribe to our newsletter: https://elsihub.org/news-and-events/newsletter Follow us on BlueSky @elsihub.bsky.social: https://bsky.app/profile/elsihub.bsky.social and tag us with the hashtag #ELSIJournalClub Follow us on LinkedIn: https://www.linkedin.com/company/elsihub/ 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 13:02:03 From John Quain : Thanks so much for today's presentation!!