Return of Genetic Results in Kidney Research – Emerging Practices Workshop
While most research participants expect to learn about clinically relevant results obtained through their participation in research studies, implementing the return of results in genetic studies has been challenging. Some notable issues related to the adequacy of consent are the types of results to be returned, such as actionable incidental genetic findings or non-actionable but diagnostic findings, validation of results and the need for genetic counseling and follow-up clinical care. The challenges are augmented in studies involving children and when the knowledge about the clinical implications of genetic findings is only emerging, such as increased risk and polygenic risk scores.
Given the significant variability in study populations, design, and resources, along with the lack of clear standardized guidelines on how to prioritize these often-intertwined issues, we have structured this workshop to broadly touch on some of the key points to consider, along with emerging practices, as related to several NIDDK funded renal diseases consortia. As a platform for an initial discussion, we will review current plans for the return of genetic results for several studies, followed by panel discussions and break-out sessions set around key issues. Our hope is that this workshop will create a general framework to help catalyze further discussions and establish guidelines, moving forward.
July 31, 2023
Registered participants will receive a link to join the webinar via email prior to the date of the event.
The Scientific Consulting Group, Inc.