Evidence-based Policy Recommendations to Address Bioethical Challenges in the Return of Genetic Results in Nephrology

Summary: The return of individual genetic results in nephrology is key for translational genomic efforts to promote patients’ clinical care, but its success hinges largely on the ability of nephrologists and nephrology researchers to implement and facilitate the process. However, no clear policies currently exist about return of genetic results in nephrology research, and no study to date has explored the ethical and practical challenges nephrologists experience in this process. The supplement collaborates with CureGN, a 70-sites consortium dedicated to the return of genetic results for rare renal disorders, and national organizations devoted to cure heritable renal diseases, to investigate the experiences of nephrology healthcare providers in returning genetic results from research. 

  • Aim 1: Identify overarching ethical and practical challenges in return of genetic results in nephrology research and possible remedies for these challenges by surveying adult and pediatric nephrologists and other nephrology providers
  • Aim 2: conduct an iterative process to develop recommendations for return of genetic results from nephrology research. 

Research Team:

  • Hila Milo Rasouly, PhD
  • Maddalena Marasa, MD
  • Olivia A. Balderes, MA
  • Victoria Kolupaeva, PhD
  • Maya Sabatello, LLB, PhD
  • Ali Gharavi, MD