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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.
Previous Series
Explore our previous ELSIconversations series and watch the recordings of each session
ELSIconversations on Pharmacogenomic Testing (PGx) in Psychiatric Care
About this series
A collaboration between CERA and the Duke Margolis Institute for Health Policy. This two-part series examined pharmacogenomic (PGx) testing in mental health care, exploring its multifaceted ethical, legal, and social (ELSI) considerations. Across two sessions, we scrutinized empirical evidence, analyzed regulatory trends, and discussed the ethics of broad implementation to better understand the challenges and opportunities associated with PGx testing in psychiatric care settings.
Session 1: An Overview of PGx Testing from an ELSI, Psychology, and Psychiatry Perspective
Date: March 29, 2024, 12-1 pm ET / 9-10 am PT
Speakers: Nzinga Harrison, M.D., DFAPA, Sandra Yankah, PhD, Rachele Hendricks Sturrup, DHSc, MSc, MA
Moderator: Rachele Hendricks Sturrup, DHSc, MSc, MA
Session 2: Exploring Ethical, Equity, and Regulatory Implications for Pharmacogenomics in Psychiatric Care Settings
Date: April 5, 2024, 12-1 pm ET / 9-10 am PT
Speakers: Sandra Yankah, PhD, Deepak Voora, MD, Robert Schuck, PharmD, PhD, Gary Proctor, MD
Moderator: Rachele Hendricks Sturrup, DHSc, MSc, MA
ELSIconversations on the Misuse of Genomic Data
About this series
The ELSIconversations on the Misuse of Genomic Data is a collaboration between Purdue University and CERA. Recent, but reemergent misuses of genetic data and research remain a critical issue in the scientific and public spheres. While many scientists are concerned about how their own research might be misused by nefarious actors, training or advice about best practices in this area remains sparse. The first session provided a forum for the discussion of practical actions for scientists interested in preventing the misuse of genetic data and research by white supremacists and others. The second session focused on addressing the misuse of genetic data and research once it has happened.
Session 1: What Can Geneticists Do to Prevent the Misuse of Genomic Data?
Date: January 19, 2024, 1-2 pm ET / 10-11 am PT
Speakers: Amy Harmon & Jedidiah Carlson, PhD
Moderator: Robbee Wedow, PhD
Session 2: What Can Geneticists Do to Address the Misuse of Genomic Data?
Date: January 26, 2024, 1-2 pm ET / 10-11 am PT
Speakers: Benjamin Neale, PhD & Ashley Smart, PhD
Moderator: Robbee Wedow, PhD
ELSIconversations on Exploring Difference in the Biology Classroom
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
ELSIconversations on Population Genetic Screening Programs
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.
ELSIcon2022 Series
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
CLICK HERE TO WATCH THE RECORDING OF THE EVENT AND FOR MORE INFORMATION
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
CLICK HERE TO WATCH THE RECORDING OF THE EVENT AND FOR MORE INFORMATION
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?
CLICK HERE TO WATCH THE RECORDING OF THE EVENT AND FOR MORE INFORMATION
Stakeholder Perspectives on Data Sharing and Privacy
November 29 - Stakeholder Perspectives on Data Sharing and Privacy
CLICK HERE TO WATCH THE RECORDING OF THE EVENT AND FOR MORE INFORMATION
ELSIconversations on Population Descriptors in Clinical Genetics
About this series
The ELSIconversations on Population Descriptors in Clinical Genetics was a collaboration between the Ancestry and Diversity Working Group (ADWG) of the Clinical Genome Resource (ClinGen) and the CERA.
The initial ADWG ELSIconversations were comprised of a series of three events on population descriptors (e.g., race, ethnicity, and/or ancestry) on clinical genetics laboratory requisition forms. ELSI scholars were invited, along with genetic and genomic researchers and those in related disciplines, to join us for these ELSIconversations and add their voice to interactive discussions of population descriptors in clinical care and genomics.
Session 1: Shedding Light on the Use of Population Descriptors in Clinical Genetics
Date: April 29, 2022
Speakers: Alice Popejoy, PhD, Gillian Hooker, PhD, ScM, CGC, & Hannah Wand, MS, CGC
Moderator: Mildred Cho, PhD
Session 2: Utility of Population Descriptors in Clinical Genetics
Date: May 6, 2022
Speakers:Julia Gimbernat-Mayol, MEng, Carlee Dawson, BA, & Dee McKnight, PhD
Moderator: Shoumita Dasgupta, PhD
Session 3: Revisions to Demographic Representations on Clinical Lab Requisition Forms
Date: May 20, 2022
Speakers: Laura Duque-Lasio, MD & Ana Morales, MS, CGC
Moderator: Altovise Ewing, PhD, LCGC
ELSIcon2020 Series
About this series
ELSIcon2020 ELSIconversations focused on presentations that were originally accepted for the canceled 2020 ELSI Congress.
21 presenters recorded 15-minute presentations of their original research. During each ELSIconversation session, attendees watched the presentations and then came together for discussion and Q&A with the presenters and moderators. While the discussion and Q&A were not recorded, the presentation recordings are available to view here on ELSIhub.
Session 1: Ethics Practices for the Direct-to-Consumer Industry
Date: February 26, 2020
Co-Moderators: Mildred Cho and Alexis Walker
Presenters:
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
Session 2: Community Perspectives on Recruitment to Genetics Research
Date: March 5, 2020
Co-Moderators: Sandra Soo-Jin Lee and Michelle McGowan
Presenters:
Megan Doerr & Joon-Ho Yu: Developing Pathways for Community-led Research with Big Data: A Content Analysis of Stakeholder Interviews
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
Session 3: Oversight of Human-Animal Chimera Research: Views of Scientists, Researchers, Oversight Committees, and the Public
Date: March 19, 2020
Co-Moderators: Mildred Cho and Hank Greely
Presenters:
Session 4: Identifying Best Practices for Clinical Genetics Delivery
Date: March 26, 2020
Co-Moderators: Sandra Soo-Jin Lee and Barbara Biesecker
Presenters:
Session 5: Issues at the Intersection of Identity and Genome Science
Date: April 2, 2020
Co-Moderators: Mildred Cho and Osagie Obasogie
Presenters:
Session 6: Challenges and Opportunities in Implementing Precision Medicine at the National Scale
Date: April 16, 2020
Co-Moderators: Sandra Soo-Jin Lee and Malia Fullerton
Presenters:
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
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