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The Emergence of Prenatal Gene Therapy: An "Embedded Ethics" Ethnography investigating Clinical, Scientific and Societal Values

Organization UNIVERSITY OF CALIFORNIA, SAN FRANCISCOLocation SAN FRANCISCO, UNITED STATESPosted 8 Jul 2022Deadline 31 Jan 2026 ⚠️
NIHUS FederalResearch GrantFY20250-11 years oldAffectAnimal ModelAnimal Models and Related StudiesAreaAttentionAwardBioethicsBiomedical EthicsCaliforniaChildChild YouthChildren (0-21)ClinicClinicalClinical geneticsCollaborationsCommunitiesComplementComplement ProteinsComplexDNA TherapyDataDecision MakingDiagnosisDiagnosticDiseaseDisorderELSIEarly-Stage Clinical TrialsEducationEducational aspectsEnsureEnvironmentEnzyme GeneEnzymesEquityEthical AnalysesEthical AnalysisEthicsEthnographyExclusionExerciseExpectancyFeedbackFetal ExperimentationFetal ResearchFetal TherapiesFetusFutureGene ModifiedGene Transfer ClinicalGene therapy trialGenesGeneticGenetic DiseasesGenetic InterventionGenomeGenomic medicineGenomicsGerm LinesGestationGoalsHealthHealth CareHealth InequityHuman GeneticsInequalities in HealthInequities in HealthInequityInfrastructureInterventionInterviewKnowledgeMaternal MortalityMedical GeneticsMentorsMentorshipMethodologyMethodsMolecularMorbidityMorbidity - disease rateNHGRINational Center for Human Genome ResearchNational Human Genome Research InstituteOutcomeParentsPathway interactionsPatient PreferencesPatientsPhase 1 Clinical TrialsPhase I Clinical TrialsPoliticsPregnancyPreventative treatmentPreventivePreventive treatmentProcessProgenitor CellsPublic ParticipationReproductive HealthReproductive TechnologyResearchResearch TrainingSamplingSan FranciscoScholarshipScienceScientific Advances and AccomplishmentsShapesSiteSocial ValuesSocial supportStrategic visionStructureTechnologyTherapeuticThinkingTimeTrainingUncertaintyUniversitiesaccess to health careaccessibility of health careaccessibility to health carecareerclinical decision-makingclinical geneticistcommunity consultationcommunity engagementcomplementationcostdesigndesigningdevelop therapydisparity in caredisparity in healthdisparity in health caredoubtengagement with communitiesethicalethical legal and socialethical, legal, and social implicationethnographicexperiencefetalfetus therapyfrontiergene modificationgene repair therapygene therapygene transfer trialgene-based therapygenetic conditiongenetic counselorgenetic disordergenetic therapygenetically modifiedgenetics cliniciangenetics physiciangenome editinggenome medicinegenomic editinggenomic therapyhealth care accesshealth care availabilityhealth care disparityhealth care inequalityhealth care inequityhealth care service accesshealth care service availabilityhealth disparityhealth equityhealth inequalitieshuman genomicsimprovedin uteroin utero therapyinnovateinnovationinnovativeinnovative technologiesintervention developmentkidsknowledge translationmaternal deathmaternal morbiditymaternal riskmedical geneticistmembermodel of animalparentpathwayphase I protocolpostnatalpre-clinicalprecision medicineprecision-based medicinepreclinicalprenatalprenatal therapyprogramsprospectiverepairrepairedscientific accomplishmentsscientific advancesskillssocialsocial disadvantagesocial disparitiessocial inclusionsocial inequalitysocial support networksocio-economicsocio-economicallysocioeconomicallysocioeconomicsstem cellstherapy developmentthoughtstreatment developmentunbornyoungster

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Project Summary/Abstract
Genomic medicine and U.S. healthcare have reached an inflection point, where the next wave of innovative

technologies may alleviate or exacerbate existing health inequity. There are multiple ethical, legal and social

implications (ELSI) of transitioning from precision diagnosis to preventive treatments for genetic disease…

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