Two New Articles Published by HBHE Genetics Team Members

Publications address ethical and practice issues involved in both genetic testing for neurodegenerative disorders and direct-to-consumer genetic testing.

Group director, Dr. Scott Roberts, and group genetic counselor, Wendy Uhlmann, published an article in April in the Journal of Progress in Neurobiology about the important ethical and practice issues related to genetic testing for neurodegenerative diseases. Examples of such ethical and practice issues include: test access, informed consent, risk estimation and communication, return of results, and policies to prevent genetic discrimination. The review article is titled, “Genetic susceptibility testing for neurodegenerative diseases: Ethical and practice issues,” addresses several topics relevant to the development and implementation of genetic susceptibility tests across research, clinical, and consumer settings.

In addition, just this past month, Dr. Scott Roberts, and Ph.D. student Jenny Ostergren, published an article in the Journal of Current Genetic Medicine Reports, titled “Direct-to-Consumer Genetic Testing and Personal Genomics Services: A Review of Recent Empirical Studies.” Direct-to-consumer genetic testing (DTC-GT) has sparked much controversy and undergone dramatic changes in its brief history. The authors summarize numerous recent studies on DTC-GT and comment on the implications of these studies’ findings for our understanding of the potential benefits, harms, and limitations of DTC-GT and related personal genomics services.

To read these articles, as well as other published articles by the group, please visit our Publications page found here.