ELSIconversations is a series of networking events focused on a range of ELSI research topics. Many sessions offer practical solutions, recommend action steps, and supply useful resources. Each series brings something new to the conversation–be it a novel use of research methodologies, the latest developments in genomics, new trainee research, or any topic suggested by our community of ELSI researchers and those with an interest in ELSI research. The goal of ELSIconversations is for everyone involved to make new connections and start new conversations about ELSI research.
Upcoming ELSIconversations events will be posted here soon.
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You can watch the recordings of previous ELSIconversations events further down this page.
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Explore our previous ELSIconversations series and watch the recordings of each session
About this Series
"Exploring Difference in the Biology Classroom: Bringing together educators and researchers for conversations about the ethical, legal, and social implications (ELSI) of genetics" is a collaboration between pgEd (Personal Genetics Education Project) and CERA to present the latest ELSI research as a resource for educators to use in the classroom. Each of the four events in this ELSIconversations series will have one or more ELSI researchers presenting new material followed by a discussion and a Q&A session.
Session 1: How to represent wide-ranging family structures and personal identities using the latest pedigree nomenclature
Date: December 1, 3-4 pm PT / 6-7 pm ET
Speakers: Ina Amarillo, PhD & Robin Bennett, MS, LGC, PhD Hon
Co-Moderators: Marnie Gelbart, PhD & Nadine Vincenten, PhD
Session 2: Engaging with Genetic Disability and Difference
Date: March 8 2023, 3-4 pm PT / 6-7 pm ET
Speakers: Kara Ayers, PhD & Joel Michael Reynolds, PhD
Moderators: Rob O'Malley, PhD & Marnie Gelbart, PhD
Session 3: What Genetic Ancestry Tests Mean (and What They Don't)
Date: April 11 2023, 3-4 pm PT / 6-7 pm ET
Speakers: Janina Jeff, PhD, MS & Jada Benn Torres, PhD
Moderators: Rob O'Malley, PhD & Nadine Vincenten, PhD
Session 4: Beyond Mendel: Leading with Complexity when Teaching Human Genetics
Date: May 11 2023, 3-4 pm PT / 6-7 pm ET
Speakers: Shawneequa Callier, JD, MA & Eimear Kenny, PhD
Moderators: Rob O'Malley, PhD
About this series
Ethical considerations and strategies for launching, evaluating, and improving population genetic screening programs
At the ELSI Congress in June 2022, genetic counselor Kim Foss and ELSI scholar Kate Saylor led a dynamic networking session on “Ethical Topics Associated with Population Genomic Screening”. Participants were eager to expand on some of the key issues that arose during that session. This series features 3 interactive discussions built on the ELSIcon2022 networking session.
Session 1: Illuminating Ethical Issues Encountered in Population Screening Programs
Date: January 20, 2023 12-1 pm ET
Speakers: Aaron Goldenberg, PhD, MA, MPH & Amy Sturm, MS, CGC, & Adam Buchanan, MS, MPH, CGC
Moderator: Kim Foss, MS, CGC
In the first of three sessions, panelists with experience with population genetic screening programs discussed issues that have arisen with existing screening programs. Topics included ethical and equity considerations of informed consent, defining utility, selecting genes of interest, and managing downstream care. Recognizing that many people in the audience will also have relevant experience, everyone will be invited to share their experiences and concerns through live discussion with the panelists and through an online whiteboard.
Session 2. Constructing Strategies to Address and Assess Equity, Outreach, and Impact
Date: January 27, 2023 12-1 pm ET
Speakers: Amy Lemke, PhD, MS & Yue Guan, MB, PhD, ScM
Moderator: Kate Saylor, PhD
The second session highlighted strategies and solutions to some of the issues raised in Session 1. There was specific focus on community engaged research and implementation strategies that target equity and community-specific needs. Audience members were again invited to share their own experiences of what strategies have worked well and attempts that have been less successful.
Session 3. Responsible Stewardship: Establishing Standard Data Elements and a Community of Practice
Date: February 3, 2023 12-1 pm ET
Speakers: Alanna Rahm, PhD, MS, LGC & Megan Roberts, PhD
Moderator: Kim Foss, MS, CGC
In the final session, panelists lead the charge for establishing a community of practice that is best able to share experiences across programs. Topics included key data elements, reporting and sharing, promoting equity through knowledge sharing, and ensuring program sustainability. This session was forward-looking, with the goal of generating ideas for building a community of health services researchers, program directors, clinicians, and ELSI researchers who care about promoting ethical implementation of population genomic screening.
About this Series
This series included selected recordings from the 2022 ELSI Congress, grouped by topic into four one-hour discussion and networking sessions. The presentation authors briefly recapped their research at each session, followed by moderated discussion and audience Q&A.
Access to Genetic Screening and Therapies: Case Study of Sickle Cell Disease
February 15 2023, 4-5 pm ET / 1-2 pm PT - Access to Genetic Screening and Therapies: Case Study of Sickle Cell Disease
Innovating Equitable Communication Modalities for Patient Activation and Cascade Testing for Familial Hypercholesterolemia
December 16 - Innovating Equitable Communication Modalities for Patient Activation and Cascade Testing for Familial Hypercholesterolemia
The All of Us Research Program: What Duties do Researchers Have When Conducting Precision Medicine Research?
December 13 - The All of Us Research Program: What Duties do Researchers Have When Conducting Precision Medicine Research?
Stakeholder Perspectives on Data Sharing and Privacy
November 29 - Stakeholder Perspectives on Data Sharing and Privacy
Terms and Conditions
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For those who cannot attend the live event, the event will be recorded and archived on the ELSIhub Video page. Closed captioning and/or transcripts will be provided for live and recorded events.
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