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 ELSIconversations series!
"Bringing together educators and researchers for conversations about the ethical, legal, and social implications (ELSI) of genetics" is a collaboration between pgEd and CERA to present the latest ELSI research as a resource for educators to use in the classroom. Each of the four events will have one or more ELSI researchers presenting new material followed by a discussion and a Q&A session. Click here to register and for more information.
This series includes selected recordings from the 2022 ELSI Congress, grouped by topic into four one-hour discussion and networking sessions. The presentation authors will briefly recap their research at each session, followed by moderated discussion and audience Q&A. Please register for each session separately, and watch the videos (available at the links below) before joining.
Save the dates and register! All sessions will be held 9-10am PT/12-1pm ET. Please note: the videos will not be played at the networking sessions and are to be watched in advance.
November 29 - Stakeholder Perspectives on Data Sharing and Privacy
Co-Moderators: Vasiliki N. Rahimzadeh, PhD; Sara Ackerman, PhD, MPH; & Sandra Soo-Jin Lee, PhD
- Karen Meagher, PhD: ELSI and the New Precision Stewards?
- Alyx Vogle, MS CGC: INSIGHT @ Work: An Interdisciplinary Study on the Ethical, Legal and Social, Implications (ELSI) of Voluntary Workplace Genomic Testing (wGT)
- LaKisha David, MCP, PhD: An Exploration of Family Connection and African Ethnic Identity Development Among African Americans Finding African Genetic Relatives While Using Consumer Genetic Genealogy Services
- Establishing a blockchain-enabled Indigenous data sovereignty framework for genomic data
- The new precision stewards?
- Why paying individual people for their health data is a bad idea
- Employees' views and ethical, legal, and social implications assessment of voluntary workplace genomic testing
- Voluntary workplace genomic testing: Wellness benefit or Pandora's box?
December 13 - The All of Us Research Program: What Duties do Researchers Have When Conducting Precision Medicine Research?
Co-Moderators: Johanna Crane, PhD & Mildred Cho, PhD
- Katherine Blizinsky, PhD; Subhashini Chandrasekharan, PhD; & Sonya Jooma, MA: The All of Us Responsible Conduct of Research Training: Fostering Ethical and Socially Responsible Research with Data from All of Us Participants
- Rachel Bailey, ABD: Investigating and Ethos of Duty in Precision Medicine Research Calls for Minority Participation
December 16 - Innovating Equitable Communication Modalities for Patient Activation and Cascade Testing for Familial Hypercholesterolemia
Co-Moderators: Nora Henrikson, PhD, MPH & Mildred Cho, PhD
- Gemme Campbell-Salome, PhD & Kelly Morgan, LGC: Innovating Equitable Communication Modalities for Patient Activation and Cascade Testing for Familial Hypercholesterolemia: Cases of Ethical, Legal, and Social Complexities from a Pragmatic Trial
January 10, 2023 - Access to Genetic Screening and Therapies: Case Study of Sickle Cell Disease
Co-Moderators: Liza Johnson, MD, MPH, MSB & Sandra Soo-Jin Lee, PhD
- Jeanne O'Brien, MD, MSc: Will it be easier to cure sickle cell disease through gene therapy than prevent the disease through pre-implantation genetic testing for the selection of unaffected embryos?
Spring 2022 - ELSIconversations with the Ancestry and Diversity Working Group (ADWG) of ClinGen
- 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
- 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
- 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
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
- 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
ELSIcon2020 ELSIconverasations- 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.
Schedule and Videos
February 26 - Ethics Practices for the Direct-to-Consumer Industry
Co-Moderators: Mildred Cho and Alexis Walker
- Emily Bullis & Anjali Shastri: A Prospectus on Ethical Issues in the Context of Collaborations Between Academic and Non-academic Institutions on Genetics Research
- Rachele Hendricks-Sturrup: A Qualitative Study to Develop a Privacy and Nondiscrimination Best Practice Framework for Personalized Wellness Programs
- Ben Wills: Platform Heals? Ethical Issues in Direct-to-consumer Telepharmacies
March 5 - Community Perspectives on Recruitment to Genetics Research
Co-Moderators: Sandra Soo-Jin Lee and Michelle McGowan
- Megan Doerr & Joon-Ho Yu: Developing Pathways for Community-led Research with Big Data: A Content Analysis of Stakeholder Interviews
- Ilaria Galasso: Democratic approaches to precision medicine and genetics research: comparing inclusiveness and effectiveness of PPI practices to the pursuit of the public good
- Catherine Hammack-Aviran: Sexual and Gender Minorities’ Perspectives on Genetic Privacy and Identity in Research
- Stephanie Kraft: What does ‘respect for persons’ really mean? Practical considerations for demonstrating respect in genomics research
March 19 - Oversight of Human-Animal Chimera Research: Views of Scientists, Researchers, Oversight Committees, and the Public
Co-Moderators: Mildred Cho and Hank Greely
- Kaitlynn Craig: When Dogs Play Cards: Interviews with Scientists, Researchers, and Oversight Committee Members on Ethical Guidelines for Human-Animal Chimera Research
- Ben Wills & Isabel Bolo: Which Public, What Comments? An Analysis of Public Comments on Human-Animal Chimera Research Submitted to the National Institutes of Health
March 26 - Identifying Best Practices for Clinical Genetics Delivery
Co-Moderators: Sandra Soo-Jin Lee and Barbara Biesecker
- Nora Henrikson: Patient and family preferences on direct contact by a health system to invite cascade screening
- Kelly Ormond: Defining the Critical Components of Informed Consent for Genetic Testing
- Natalie Pino: Racial and Ethnic Classification in the Clinic: Is it Just?
April 2 - Issues at the Intersection of Identity and Genome Science
Co-Moderators: Mildred Cho and Osagie Obasogie
- Felicity Boardman: Human Germline Genome Editing and the Identity Politics of Genetic Disability
- Catherine Hammack-Aviran: Direct-to-Consumer Genetic Testing: Public Perspectives and Considerations Regarding Ancestry and Kinship
April 16 - Challenges and Opportunities in Implementing Precision Medicine at the National Scale
Co-Moderators: Sandra Soo-Jin Lee and Malia Fullerton
- Katherine D. Blizinsky: Part 1. Ethical, Legal and Social Implications (ELSI) on the frontiers of Precision Medicine Research at National Scale: Experiences of the NIH All of Us Research Program
- Subhashini Chandrasekharan: Part 2. Ethical, Legal and Social Implications (ELSI) on the frontiers of Precision Medicine Research at National Scale: Experiences of the NIH All of Us Research Program
- Tierry M. Laforce: Using an implementation research tool to guide the implementation of non-invasive prenatal screening
- Mary A. Majumder: Part 1. Assessing Access to Care in the Clinical Sequencing Evidence-Generating Research Consortium: Contexts and Challenges
- Amanda M. Gutierrez: Part 2. Assessing Access to Care in the Clinical Sequencing Evidence-Generating Research Consortium: Contexts and Challenges
- Sara L. Ackerman: Part 3. Assessing Access to Care in the Clinical Sequencing Evidence-Generating Research Consortium: Contexts and Challenges
- Sara J. Knight: Part 4. Assessing Access to Care in the Clinical Sequencing Evidence-Generating Research Consortium: Contexts and Challenges