ELSIconversations ELSICon2022: Stakeholder Perspectives on Data Sharing and Privacy

Co-Moderators: Vasiliki N. Rahimzadeh, PhD; Sara Ackerman, PhD, MPH; & Sandra Soo-Jin Lee, PhD

Presenters: Karen Meagher, PhD, Alyx Vogle, MS CGC, & LaKisha David, MCP, PhD

Links to pre-recorded videos: 

• 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

Links to optional reading: 

• 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?

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. 

Suggested citation: 

Rahimzadeh, V. N., Ackerman, S., & Lee, S. S-J., Meagher, K., Vogle, A., & David, L. (2024, November 29). Stakeholder perspectives on data sharing and privacy [Video]. The Center for ELSI Resources and Analysis (CERA). https://elsihub.org/video/elsiconversations-elsicon2022-stakeholder-perspectives-data-sharing-and-privacy