Feb 8, 2021

ELSIconversations

ABOUT

ELSIconversations is a series of networking events on ELSI research. Each series will bring something new to the conversation, be it a series on research methods, latest developments in a particular field, trainee presentations, or any topic suggested by our community of ELSI researchers and those with an interest in ELSI research. We hope everyone will make new connections and start new conversations on ELSI research!

To propose a new ELSIconversations event or series, please send us a brief description of the topic(s), goals, ideal audience, and how holding the ELSIconversations may benefit the ELSI community. We will review the proposal and work with you to set up logistics, including an effective format, outreach plan, and hosting of videos or outputs from the event or series.

Check back here and read the ELSIhub Newsletter to find out about upcoming ELSIconversation series!

SERIES

SERIES 2 - Spring 2022 - ELSIconversations with the Ancestry and Diversity Working Group (ADWG) of ClinGen

Save the dates and register below! All sessions will be held 9-10am PT/12-1pm ET. Please note: the recordings will not be played at the networking events and should be watched in advance. We will update this page with resources and videos as we move closer to each session.

The initial ADWG ELSIconversations are comprised of a series of three events on population descriptors (e.g., race, ethnicity, and/or ancestry) on clinical genetics laboratory requisition forms.
We invite ELSI scholars, along with genetic and genomic researchers and those in related disciplines, to join us for these ELSIconversations and add your voice to interactive discussions of population descriptors in clinical care and genomics.

SESSION 1 - April 29: Shedding Light on the Use of Population Descriptors in Clinical Genetics - Watch the recording

Question: How is information about patient race, ethnicity, and ancestry on clinical laboratory requisition forms used in your work? In clinical genetics more broadly?

Goal: Understand context for race, ethnicity, and ancestry on clinical lab requisition forms

Speakers:

Alice Popejoy, PhD: Shedding Light on the Use of Population Descriptors in Clinical Genetics
Gillian Hooker, PhD, ScM, CGC: The Challenges of Standardization in a System with Complex Incentives
Hannah Wand, MS, CGC: Race, Ethnicity, and Ancestry (REA) in Clinical Genetics: Variability in Collection and Use

Moderator: Mildred Cho, PhD

SESSION 2 - May 6: Utility of Population Descriptors in Clinical Genetics - Watch the recording

Question: What is the most important information, conceptually, for clinical genetics professionals to do their jobs well? Is the information always necessary; if not, when is it critical vs. extraneous? When is it potentially harmful?

Goal: Distill the most relevant information among population descriptors that serves a purpose in the clinical curation pipeline, or other clinical genetics work

Speakers:

Julia Gimbernat-Mayol, MEng: Clinical Genetics Laboratories Use Divergent Demographic Frameworks Across Countries
Carlee Dawson, BA: Diversity Measures in Genomic Medicine
Dee McKnight, PhD: How Race, Ethnicity, and Ancestry Information is Used in Genetic Diagnostics: One Lab's Perspective

Moderator: Shoumita Dasgupta, PhD

SESSION 3 - May 20: Revisions to Demographic Representations on Clinical Lab Requisition Forms - register here

Question: If changes to these forms were to be recommended, what are the considerations that need to be made to implement these changes? Barriers/opportunities?

Goal: Identify the considerations necessary to change these clinical forms

Speakers:

Laura Duque-Lasio, MD: Challenges in Implementing Changes in the Collection of Race, Ethnicity, and Ancestry Data in Test Requisition Forms
Ana Morales, MS, CGC: Standardizing Lab Requisition Forms for Hypertrophic Cardiomyopathy (HCM): A ClinGen Cardiovascular Disease Working Group Initiative

Moderator: Altovise Ewing, PhD, LCGC

SERIES 1 - Winter/Spring 2021 - focused on presentations that were originally accepted for the canceled 2020 ELSI Congress. The 21 participants recorded 15-minute presentations of their original research which were posted on ELSIhub. All of the videos can be accessed in the series list below and on the ELSIhub video page. The ELSIconversations were six hour-long events, organized by topic, where attendees watched the videos and then came together for discussion and Q&A with the presenters and moderators. While the ELSIconversations were not recorded, all the videos are available to view.