ELSIconversations debuts with a series of six themed one-hour networking discussions on ELSI research. Join us from 12:00-1:00 pm ET / 9:00-10:00 am PT starting Friday, February 26.
This initial series of discussions focuses on presentations that were originally accepted for the canceled 2020 ELSI Congress and are now available as ~15-minute videos. Please watch the videos you are interested in before attending the related discussion. They will not be shown during the discussion.
The presenters will answer questions about their research and take part in an open discussion with all attendees. Please bring your questions, join the discussion, and expect to network with your colleagues. We hope you will make new connections and start new conversations on ELSI research!
The schedule of the talks and a link to each video are below. Please register for each ELSIconversations event you would like to attend. Contact us at [email protected] with any questions.
Please note: by registering for an ELSIhub event participants and attendees agree to abide by the ELSIhub Code of Conduct.
February 26 - Ethics Practices for the Direct-to-Consumer Industry - REGISTER
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 - REGISTER
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 - REGISTER
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 - REGISTER
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 - REGISTER
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 - REGISTER
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