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.