Understanding Informed Consent
Channel: National Human Genome Research Institute
Date: 2022-01-04

Julie Sapp, Sc.M., C.G.C., a genetics counselor in the NHGRI's Precision Genomics Section, and Elena Ghanaim, M.S., a policy analyst in NHGRI's Policy and Program Analysis Branch, have a candid conversation about the informed consent process and what is involved. They also discuss the ongoing challenges to the informed consent processes, its future and the ways it may improve over time.

Related Fact Sheets:
The Informed Consent Process: https://www.genome.gov/informed-consent
Why is Informed Consent Required: https://www.genome.gov/about-genomics/educational-resources/fact-sheets/why-is-informed-consent-required

Chapters:
0:00 - Start
0:07 - Introduction (Elena Ghanaim)
0:18 - Introduction (Julie Sapp)
0:34 - What is informed consent?
2:11 - How regulations and researchers' expectations are relatively new
3:26 - What is the Institutional Review Board (IRB)? 
5:04 - What are some ongoing challenges for obtaining informed consent today?
7:00 - What does a successful informed consent dialogue with a participant look like?
8:46 - What does the future of informed consent look like? What ways might it get better over time?