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GURU: A Unique ELSI Pipeline Program for Students with Disabilities
Because ELSI is not confined to a single academic discipline or institutional home, pipeline programs that provide training for an ELSI research career are critical to the longevity of the field of… -
Publication
Benefit sharing in genomic and biobanking research in Uganda: Perceptions of researchers and research ethics committee members
Frontiers in Genetics -
Publication
Leveraging algorithms to improve decision-making workflows for genomic data access and management
Biopreservation and Biobanking -
Publication
Practices and attitudes toward returning genomic research results to low-resource research participants
Public Health Genomics -
Publication
Motivating and discouraging factors for bipolar patient participation in genomic research
Public Health Genomics -
Publication
Synthetic health data: Real ethical promise and peril
Hastings Center Reportby Daniel Susser, Daniel S Schiff, Sara Gerke, Laura Y Cabrera, I Glenn Cohen, Megan Doerr, Jordan Harrod, Kristin Kostick-Quenet, Jasmine McNealy, Michelle N Meyer, W Nicholson Price II, &… -
Publication
Investigating genetic counselors' communication with Lynch syndrome patients about cascade testing: Barriers, facilitators, and strategies
J Genet CounsUniversity of Utah Center of Excellence in ELSI research (UCEER). Grant number(s): RM1HG009037 -
Publication
Immortal data: A qualitative exploration of patients’ understandings of genomic data
European Journal of Human GeneticsLyle and colleagues analyze how patients and their relatives conceptualize the “immortality” of genomic data. They find that participants focus on the simplicity of providing a sample instead of the… -