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2022 PRIM&R Annual Conference

Pharma/Biotech Perspectives

Research Involving Data and Biospecimens

F12 - The Return of Genetic Information

Thursday, December 15, 2022
11:45 AM – 12:45 PM ET
Location: On-Demand
On-Demand Session CIP Accredited Human Subjects Research Deep Dive Series
Genetic information is increasingly being generated in research. As technology and our understanding of diseases evolve, more findings are becoming actionable and of great interest. This can lead to questions about what a researcher should do when they discover a genetic finding in a patient. Under what circumstances do they have an obligation to tell the patient? What if the patient doesn't want to know? What about potentially impacted family members? When should genetic counseling be provided? Is there an obligation to review findings when new markers are validated?

Learning Objectives:

  • Consider what makes genetic information special from an ethical perspective
  • Identify considerations for return of genetic information (including as more become significant and actionable after the fact)
  • Discuss considerations related to how to return genetic information and to whom