We are a multi-disciplinary research team at Columbia University, conducting a study titled “Individualized Therapies for Genetic Disorders,” funded by a grant from the National Human Genome Research Institute. The purpose of this research study is to better understand the perspectives of stakeholders on issues raised by individualized gene therapies that involve only one or a very small number of patients. We invite IRB members to participate!  

We have been interviewing clinical geneticists and parents of children with rare genetic disorders, and are now looking to interview IRB members about the ethical and regulatory issues with individualized gene therapies. To be eligible for this research you must be an IRB member who reviews human subjects research applications. We are especially interested in those of you who have experience reviewing individualized gene therapy protocols. 

Your participation will involve an interview conducted on the phone or via Zoom that is expected to take 45 minutes.  Participants will receive a $50 Amazon gift card upon completion of the interview.

The researchers who will be conducting the interviews are Paul Appelbaum, a psychiatrist with many years of studying the ethics of human subjects research and whose recent research has focused on issues in genetic research and treatment; and Sandra Soo-Jin Lee, an anthropologist and bioethicist, who has led multi-disciplinary bioethics research on race, ancestry and equity in genomics, precision medicine and artificial intelligence, and other topics.

If you know anyone else that might be interested in this research, please feel free to share this post with them.

For questions or to schedule an interview, please contact:
Dounya Alami-Nassif
Administrative Coordinator | Division of Ethics
Department of Medical Humanities and Ethics (MHE)
Columbia University | Vagelos College of Physicians & Surgeons
da2980@cumc.columbia.edu