Governing Secondary Research Use of Genetic Data: Controlling the Revolving Door Between Academia and Industry
Presented by: Kayte Spector-Bagdady, JD, MBioethics
Date: Tuesday, February 16th, 2021
Time: 12:00-1:30pm
Location: Webcast Only
To Join, click the link below:
https://ucsf.zoom.us/j/93697603442?pwd=ZlQ5Mk5qMEhPRmZTWVFhTXgvMk9IQT09
Meeting ID: 936 9760 3442
Password: 058645
Some of the most promising recent advances in health research offer opportunities to improve diagnosis and therapy for millions of patients. They also require access to massive collections of health data and specimens. This need has generated an aggressive and lucrative push toward amassing troves of human data and biospecimens within academia and private industry. But the differences between the strict regulations that govern federally funded researchers in academic medical centers (AMCs) versus those that apply to the collection of health data and specimens by industry can entrench disparities. This presentation will discuss the value of secondary research with data and specimens and analyze why AMCs have been put at a disadvantage as compared to industry in amassing the large datasets that enable this work. It will explore the limitations of this current governance structure and propose that, moving forward, AMCs should set their own standards for commercialization of the data and specimens they generate in-house, the ability of their researchers to use industry data for their own work, and baseline informed consent standards for their own patients in order to ensure future data accessibility.
Professor Kayte Spector-Bagdady is Associate Director for the Center for Bioethics & Social Sciences in Medicine and Assistant Professor in the Department of Obstetrics and Gynecology at the University of Michigan Medical School. A lawyer and bioethicist by training, her policy and empirical research focuses on the ethics and regulation of secondary research use of health data and human biospecimens. At U-M she is the Chair of the Research Ethics Committee and a practicing clinical ethicist. Professor Spector also served as Associate Director for President Obama’s Presidential Commission for the Study of Bioethical Issues from 2010-15. During that time she was a staff lead author on reports spanning the unethical STD experiments in Guatemala in the 1940s, emerging genetic and data technologies, and the U.S. response to the 2013 Ebola outbreak. She is on the Board of Directors for the American Society for Bioethics & Humanities.
For questions or concerns please contact Matty Norstad, Bioethics Program Manager, at [email protected].
