For a paper in the European Journal of Human Genetics, investigators at the University of Tartu's Estonian Genome Centre and other European sites discuss considerations for returning individual results to participants in population biobank studies, while sharing participant experiences and feedback from available survey data. In particular, the team reviewed procedures established for the Estonian Biobank before, during, and after return of result visits to understand which steps to take forward when sharing results with the broader participant population. Based on survey data for up to 2,905 Estonian Biobank participants who received genetic results of some type, the authors suggest that "participants perceived the information that they received with counseling as valuable, even when the reporting of high risks initially caused worry." Even so, they note, "additional means of communication need to be considered" to expand the return of results, since the face-to-face counseling sessions used to deliver results may be difficult to scale up sufficiently.
Estonian Biobank Team Digs into Results Return Strategies, Experiences
Oct 04, 2022