ELSIcon2020 ELSIconversations
ELSIcon2020 ELSIconversations 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
