Health care system-led familial risk notification: design and ethical assessment
Institution: KAISER FOUNDATION RESEARCH INSTITUTE
FOA Number: PA-17-444
PROJECT NARRATIVE Health systems could work with genetic patients by directly notifying relatives who receive care in the same health system, but no U.S.-based care models have emerged and many questions with ethical and social implications remain. We propose a human-centered design and feasibility study of health system-led familial outreach and risk notification. In the first aim, we will use qualitative design methods to assess user needs and requirements assessment activities with patients, their relatives, and clinical and health system stakeholders; in the second aim, we will test the outreach process in a prospective sample, assessing its feasibility and limited impact on genetic testing behavior.
NATIONAL HUMAN GENOME RESEARCH INSTITUTE
Sep 20, 2018
Jun 30, 2022