Governance of Genetic Information - On Tech Ethics

Discusses ethical issues and governance considerations associated with the collection, analysis, and sharing of genetic material and information. 

Our guest today is Shelly Simana, an assistant professor at Boston College Law School. Before joining BC, she was a fellow at Stanford Law School’s Center for Law and the Biosciences and a doctoral candidate at Harvard Law School. Her scholarship lies at the intersection of law and bioethics. 

Additional resources: 

• Shelly Simana: https://www.bc.edu/bc-web/schools/law/academics-faculty/faculty-directory/shelly-simana.html 
• National Human Genome Research Institute: https://www.genome.gov/
• Technology, Ethics, and Regulations: https://about.citiprogram.org/course/technology-ethics-and-regulations/
• Bioethics: https://about.citiprogram.org/course/bioethics/ 

Chapters

• 1:04 Shelly's Background
• 2:34 Defining Genetic Material and Information
• 6:15 Uses of Genetic Material by Entities
• 9:17 Key Ethical Issues in Genetic Material Collection
• 15:58 Inadequacies of Current Laws
• 20:55 Proposed Solutions for Legal Framework
• 23:14 Importance of Comprehension Over Consent
• 24:36 Prohibiting Surreptitious Collection
• 25:30 Privacy Protections for Genetic Information
• 26:14 Benefit Sharing for Genetic Material Use
• 26:52 Research Articles and Scholars
• 27:23 Educational Resources on Genetic Research
• 28:16 Final Thoughts on Collaboration
• 28:44 Adapting Legal Frameworks
• 29:24 Fostering Public Trust
• 29:53 Conclusion and Further Learning