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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
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
Code of Conduct
By registering for an ELSIhub event, attendees agree to abide by the ELSIhub Code of Conduct: https://elsihub.org/news/code-conduct
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. If you have any questions, including requests regarding accessibility, please email us at: [email protected].