ELSI at 黑料网 /elsi Fri, 18 Apr 2025 01:21:43 +0000 en-US hourly 1 Hybrid Event | Comparing Patient and Physician Attitudes About Applications of AI in Healthcare /elsi/2025/04/webinar-population-genomic-screening-from-biobank-return-of-results-to-a-clinical-screening-pilot-2/ Fri, 18 Apr 2025 01:13:36 +0000 /elsi/?p=3660 Read more]]> Tuesday, May 6

4:00鈥�5:00pm ET

Roper Hall 6310 or via Zoom

Presented by Richard Sharp, Ph.D.
Lloyd A. and Barbara A. Amundson Professor of Biomedical Ethics and Professor of Medicine, Mayo Clinic
Director of the Biomedical Ethics Program, the Center for Individualized Medicine Bioethics Program, and the Clinical and Translational Research Ethics Program

While artificial intelligence appears ready to transform multiple aspects of healthcare, studies examining physician and patient opinions about digital-health tools have been limited. This presentation will explore physician and patient perspectives on the ethical issues raised by potential uses of AI in medicine, focusing on areas where doctor and patient perspectives may not be in alignment and could generate ethical tensions.

Dr. Sharp has published widely on topics in biomedical ethics and has led several projects exploring patient and clinician perspectives on emerging healthcare technologies. His presentation will focus on stakeholder perspectives on several applications of AI in healthcare, including in psychiatry and medical documentation. He will also discuss what leaders of Academic Medical Centers might do to proactively cultivate a culture of AI safety and ethical accountability.

Please register to attend.

]]> Webinar | Population Genomic Screening: From Biobank Return of Results to a Clinical Screening Pilot /elsi/2025/04/webinar-population-genomic-screening-from-biobank-return-of-results-to-a-clinical-screening-pilot/ Wed, 02 Apr 2025 13:53:32 +0000 /elsi/?p=3653 Read more]]> Tuesday, May 6

12:00鈥�1:00pm ET

 

Virtual Presentation by Juliann Savatt, MS, CGC
Assistant Professor, Genomic Health, Geisinger Co-director, Geisinger MyCode Genomic Screening and Counseling Program

Currently, identification of individuals with genomic risk remains largely dependent on clinical testing that relies on a personal/family history of disease and access to specialty care. However, some patients with suggestive history do not come to clinical attention. Also, testing criteria are not adequately sensitive to identify all at-risk patients. Genomic screening offers a strategy to close the gap and identify more at-risk patients thus enabling increased surveillance, primary prevention, and early diagnoses.

Geisinger has over 10 years of experience screening and disclosing actionable genomic findings to biobank participants and has expanded genomic screening into clinical care through a primary care pilot. This presentation will summarize these experiences to date including the rate of pathogenic/likely pathogenic results, clinical care and outcomes following results disclosure, and patient and clinician perspectives.

Please register to attend.

]]> ELSI Journal Club Launch | March 28 | 12p ET /elsi/2025/03/elsi_journal_club_launch/ Tue, 25 Mar 2025 02:06:14 +0000 /elsi/?p=3647 Read more]]> Launch Event: March 28, 2025

 

CERA is thrilled to introduce our new event series, ELSI Journal Club, a forum for engaging with groundbreaking research that addresses the ethical, legal, and social implications (ELSI) of clinical genetics, featured in our journal partner, Genetics in Medicine.

This series aims to engage professionals from genetics, genomics, and adjacent fields in discussions about the relevance of ELSI considerations to their work, and is equally suited for those already deeply involved in ELSI research.

 

Join us for our launch session on March 28, 2025, 12:00 PM – 1:00 PM ET, for a discussion of . Genetics in Medicine, with speakers:

  • Featured Author:听Yvonne Bombard, PhD, Professor & Canada Research Chair, University of Toronto & Li Ka Shing Knowledge Institute of St. Michael鈥檚 Hospital, Unity Health Toronto
  • 顿颈蝉肠耻蝉蝉补苍迟:听Jonathan Sanford Berg, MD,听笔丑顿,听Bryson Distinguished Professor, Genetics and Medicine, 黑料网.

Click to register.

]]> ELSI 鈥� GC Exchange CEU Series /elsi/2025/02/elsi-gc-exchange-ceu-series/ Wed, 19 Feb 2025 22:01:20 +0000 /elsi/?p=3643 Read more]]> AI in Genomics and Genetic Counseling: Ethical, Legal and Social Issues. 馃К

Hosted by The Jackson Laboratory for Genomic Medicine

, a Variant Assessment Scientist at Ambry Genetics

Date: Friday, March 7, 2025

Time: 12:00 pm EST

Register here for the Zoom link:

鉁� CEU Credits for Genetic Counselors: Each event in this series has been approved by NSGC for 0.1 Category 1 CEUs for a total of up to 0.9 CEUs

If you’re interested in learning more about ELSI, check out these resources for GCs from ELSIhub | CERA:

]]> ELSIhub Collections /elsi/2024/12/elsi-publications-and-products-database-2/ Fri, 20 Dec 2024 19:31:59 +0000 /elsi/?p=3632 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. This series assembles materials from cross-disciplinary literatures to enable quick access to key information.

 

Visit this link for more information:

]]> ELSI Friday Forum | Jan 10 | 12p ET /elsi/2024/12/elsi-friday-forum-dec-13-12p-et-2/ Fri, 20 Dec 2024 18:53:00 +0000 /elsi/?p=3620 Read more]]> Public-Private Partnerships for Gene Therapies: What Does the Public Get?
Join us on听Friday, January 10 at听12pm ET听for听ELSI听Friday听Forum: Public-Private Partnerships for Gene Therapies: What Does the Public Get?,听听with speakers:
  • John Conley, JD, PhD, University of North Carolina at Chapel Hill School of Law
  • Eva Winkler, Prof, Dr.med., Dr.phil., Section for Translational Medical Ethics,听National Center for Tumor Diseases (NCT) Heidelberg
  • Moderated by Philip J. Brooks, PhD, Division of Rare Diseases Research Innovation, National Center for Advancing Translational Sciences (NCATS)
Publicly-funded researchers frequently transfer their gene therapy and gene-editing medical research to venture capital-funded startups for clinical development. In tandem, the public sector financial crisis in many countries has meant that partnerships with commercial entities are used to leverage the full potential of publicly-held genomic data. However, public-private partnerships in the genomics translational pipeline raise several key questions. Which benefits should be returned to the public, if any? How should products be priced? How should data be managed? Does involvement of publicly funded scientists in the commercial sector conflict with the commitment to deliver societally beneficial innovation?

Click to register.

]]> ELSI Friday Forum | Dec 13 | 12p ET /elsi/2024/12/elsi-friday-forum-dec-13-12p-et/ Fri, 06 Dec 2024 23:12:44 +0000 /elsi/?p=3607 Read more]]> Building a Diverse听ELSI听Workforce:听What does this mean and how should we do it?
Join us on听Friday, December 13听at听12pm ET听for听ELSI听Friday听Forum:听Building a Diverse听ELSI听Workforce: What does this mean and how should we do it?,听听with speakers:
  • Faith Fletcher, PhD, MA,听Center for Medical Ethics & Health Policy, Baylor College of Medicine
  • Debra Matthews, PhD, MA,听Johns Hopkins Berman Institute of Bioethics听
  • Moderated by听Jim Tabery, PhD, MA,听Center for Health Ethics, Arts, and the Humanities, University of Utah听
Bioethics as a field was catalyzed by grave injustices such as the US Public Health Service Untreated Syphilis Study at Tuskegee. Similarly, a major rationale for听ELSI听was to address the injustices perpetrated and rationalized by the growing science of human genetics. However, bioethics and听ELSI听attention to justice issues, especially those affecting marginalized populations, has been lacking. To facilitate a stronger focus on justice, leading bioethics and听ELSI听scholars have made recommendations for action, calling for greater diversity in the bioethics/ELSI听workforce, and reinforcing bioethics education. In this session, we will explore these recommendations in practical terms, discuss how or if they might need to be expanded to address broader types of diversity, and what challenges will be posed to achieving them.

Click to register.

]]> ELSI@黑料网 Seminar | Nov. 22, 12p | Prenatal Gene Editing for Neurodevelopmental Disease: Ethical Considerations /elsi/2024/11/nov-22-12p-elsiunc-seminar-prenatal-gene-editing-for-neurodevelopmental-disorders-ethical-considerations/ Fri, 08 Nov 2024 20:37:04 +0000 /elsi/?p=3593 Read more]]> Date: Friday, November 22

Time: 12:00pm鈥�1:00pm

Place: Roper Hall 6310

Lunch will be provided for in-person attendees.

Please register to attend.

 

Presented by Rami M. Major, Ph.D., Postdoctoral Fellow in the ELSI of Precision Medicine and Other Biotechnologies

Neurodevelopmental diseases (NDDs) are notoriously difficult to treat because clinical symptoms stem from developmental processes that begin before birth. Prenatal gene editing could fill the treatment gap for NDDS by targeting and permanently correcting the genetic variants that underlie these pathogenic developmental processes. We used the 60-year history of in utero therapy to identify 12 themes from the literature that could set precedents for prenatal gene editing interventions and discuss these in the context of NDDs.

]]> GURU: A Unique ELSI Pipeline Program for Students with Disabilities /elsi/2024/11/guru-a-unique-elsi-pipeline-program-for-students-with-disabilities/ Thu, 07 Nov 2024 22:24:27 +0000 /elsi/?p=3586 Read more]]> ELSIhub Interview with James Tabery, PhD

by Deanne Dunbar Dolan

 

Because ELSI is not confined to a single academic discipline or institutional home, pipeline programs that provide training for an ELSI research career are critical to the longevity of the field of study. These programs can also facilitate the intentional recruitment of contributors from a broad range of disciplines, professional backgrounds, and lived experiences. The National Human Genome Research Institute (NHGRI) supports ELSI research training and career development with grants awarded to institutions that provide placements for students at all levels鈥攆rom undergraduate through postdoctoral study. We asked James Tabery, PhD, Professor in the Department of Philosophy and Adjunct Associate Professor in the Center for Health Ethics, Arts, and the Humanities in the Department of Internal Medicine at the University of Utah to tell us about the Utah Center of Excellence in ELSI Research (UCEER) Graduate and Undergraduate Researchers of UCEER (GURU) Program. Graduates of the GURU Program, which is supported by the NHGRI R25 Diversity Action Plan (DAP) funding mechanism, have taken the ELSI training they received on to graduate study and a wide variety of careers.

Click to read more.

]]> Expansion of Research Hub on Ethical, Legal, and Social Implications of Advances in Human Genomics /elsi/2024/10/expansion-of-research-hub-on-ethical-legal-and-social-implications-of-advances-in-human-genomics/ Fri, 04 Oct 2024 15:05:54 +0000 /elsi/?p=3584 The Stanford Center for Biomedical Ethics and the Columbia Division of Ethics will lead a five-year expansion of their hub for research on the ethical, legal, and social implications (ELSI) of human genomics, in collaboration with The Hastings Center and Case Western Reserve University, along with multiple partner organizations.

Click to learn more!

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