Course Instructor: Julia Brown, PhD
This is a class designed to explore the ethical implications of new stem cell and gene therapies by attending to both lived experiences and ethics frameworks. We will be engaging in conversations with patients/research subjects who have participated in stem cell and gene therapy clinical trials and their physicians/scientific researchers leading these trials. A few days after each of these patient-provider focused sessions, Dr. Julia Brown will lead a discussion on the associated ethical considerations.
This course entails four sessions yearly comprised of one prerecorded introduction, and three sessions that include one in-person event and one subsequent online class per session. The in-person event constitutes the UCSF “Getting to Patients” seminar, which features one patient-doctor pair who will discuss the specifics of that therapy, followed by an audience Q&A. The online class will be attended by students only, to provide an in-depth ethics reflections guided by both the seminar and one assigned reading relevant to each case. All CIRM training grant recipients are required to attend both the in-person event and the online class.
Please contact Jessica Allen ([email protected]) if there are any previous engagements that prevent your participation so that we can consider them on a case-by-case basis. Please prepare by viewing the course ethics lecture ahead of the first week of class, and by reviewing the weekly reading materials listed below. For each seminar, consider the condition and therapy that is being offered, and questions you may have for the patient and/or physician regarding the treatment. For each class, consider what you learned from the seminar and how these learnings challenge or compliment the arguments made in the weekly readings.
Course Schedule:
Session 1
Prerecorded Lecture (requires UCSF Box login)
Introduction to Clinical Research Ethics
Please watch the above lecture before attending Session 2
Session 2:
In-Person Getting to Patients seminar: Thursday, March 14, 4:00-6:00 p.m.
Altering the Course of Type 1 Diabetes
Presenter: Stephen Gitelman, MD
Location: Parnassus Campus, HSW-302
Online Ethics Discussion: Tuesday, March 19, 1 - 2pm
Reading: Horng, Sam, and Christine Grady. "Misunderstanding in clinical research: distinguishing therapeutic misconception, therapeutic misestimation, & therapeutic optimism." IRB: Ethics & Human Research 25, no. 1 (2003): 11-16.
Session 3:
In-Person Getting to Patients seminar: Monday, May 13, 4:00-6:00 p.m.
HLH: Fixing a Broken Immune System
Presenter: Michelle Hermiston, MD, PhD
Location: HSW-300
Online Ethics Discussion: Thursday, May 16, 2 - 3pm
Reading: Kass, Nancy E., Ruth R. Faden, Steven N. Goodman, Peter Pronovost, Sean Tunis, and Tom L. Beauchamp. "The research‐treatment distinction: a problematic approach for determining which activities should have ethical oversight." Hastings Center Report 43, no. s1 (2013): S4-S15.
Session 4:
In-Person Getting to Patients seminar: September 3, 4 - 6pm
Topic TBA
Presenter: Alexander Fay, MD, PhD
Location: TBA
Online Ethics Discussion: TBA
Reading: Wolf, Leslie E. "Ethical issues in clinical research: an issue for all internists." The American Journal of Medicine 109, no. 1 (2000): 82-85.