Development of a Resource for Genetic Counselors Addressing Guidelines and Ethical Issues in Genetics Research

Posted on August 08, 2023

Tomi Toler

CAPSTONE

Capstone Project Committee: Nancy Callanan, MS, CGC, Terrance McConnell, PhD, Myra Roche, MS, CGC

The history of human subjects research has been examined extensively in the literature, and much of the conversation, while not specific to genetics, is important for genetic counselors to know. A synthesis of the literature regarding the history of human subjects research, subsequent research reforms, current rules and regulations, the institutional review board, ethical issues specific to genetics research, and the future of genetics research was completed. Four common genetics research issues are discussed, including information databases, stored samples, recruiting of relatives and incidental findings and these were evaluated. Using the information obtained, a resource for genetic counselors was created that summarizes the information in an easy question-and-answer format so that information that would be beneficial to genetic counselors would be easy to find. Recommendations for distribution of the resource, “A Guide to the Basics of Human Subjects Research in Genetics,” are made.

Since Graduation

Tomi Toler Alumni Update 2009

Tomi Toler is originally from Midwest, graduating from the University of Missouri with her undergraduate degree in 2007. After attending UNCG, she relocated to Boston initially working at Brigham & Women’s Hospital and Boston Medical Center in prenatal genetics and ultimately took a job at Massachusetts General Hospital in pediatric genetics, working there for almost 5 years. During her time in Boston, she worked with both the Boston University and Brandeis University Genetic Counseling Programs and absolutely loved supervising students and teaching. She relocated to St. Louis in 2015 to take her position at Washington University School of Medicine in St. Louis (WUSM) in the Division of Genetics & Genomic Medicine. Tomi is actively involved in teaching medical students and residents/fellows, serving on multiple residency and fellowship committees, and has supervised visiting genetic counseling students and served on thesis committees. She currently serves as the Genetic Counselor Supervisor and is the Associate Director for the newly accredited Program in Genetic Counseling at WUSM. Tomi lives with her 3.5 year old son and her cat.

Share This