|The Emergence of Prenatal Gene Therapy: An “Embedded Ethics” Ethnography investigating Clinical, Scientific and Societal Values|
NIH/NHGRI 1K99HG012379-01Jul 1, 2022 - Jun 30, 2027
Description: This K99/R00 “Pathway to Independence” Award tracks the emergence of fetal gene therapy, and it is designed to improve knowledge about the complex intersection between scientific, clinical, patient and societal values and longer-term health (in)equity. For the mentored portion, in-depth ethnographic observations (including interviews) will be augmented by 1) education in clinical genetics, genomics, and therapeutics, 2) methodological training in normative analysis, and 3) political science training in deliberative community engagement. The research examines immediate clinical and patient concerns, followed by community engagement with the public, to determine how fetal gene therapy is or is not socially inclusive – as a key step in ensuring attention to health equity goals in preventive precision medicine based on prenatal gene therapy.