Stephanie M. Fullerton

DPhil
Professor, Bioethics and Humanities at the University of Washington

Institution(s):

University of Washington
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Methods

Qualitative Methods
Mixed Methods
Survey Research

Disciplines

Research Ethics
Genetics/Genomics
Translational Research

Areas of Expertise

Health Equity
precision medicine
Data Governance
Biobanking
Stakeholder Engagement

Publications

Refining the structure and content of clinical genomic reports
Relationship between genetic knowledge and familial communication of CRC risk and intent to communicate CRCP genetic information: Insights from FamilyTalk eMERGE III
Ethical and practical guidelines for reporting genetic research results to study participants: Updated guidelines from a National Heart, Lung, and Blood Institute working group
Ethical and practical guidelines for reporting genetic research results to study participants: Updated guidelines from an NHLBI working group
Parent perspectives on pediatric genetic research and implications for genotype-driven research recruitment
Offering aggregate results to participants in genomic research: Opportunities and challenges
Recommendations for ethical approaches to genotype-driven research recruitment
Informed consent in translational genomics: Insufficient without trustworthy governance
Clinical sequencing exploratory research consortium: Accelerating evidence-based practice of genomic medicine
The clinical sequencing evidence-generating research consortium: Integrating genomic sequencing in diverse and medically underserved populations
Public attitudes toward consent and data sharing in biobank research: A large multi-site experimental survey in the U.S.
Parents’ attitudes toward consent and data sharing in biobanks: A multisite experimental survey
Ethical and practical challenges of sharing data from genome-wide association studies: The eMERGE Consortium experience
The genomic medicine integrative research framework: A conceptual framework for conducting genomic medicine research
At the research-clinical interface: Returning individual genetic results to research participants
You are just now telling us about this? African American perspectives of testing for genetic susceptibility to kidney disease
The Feelings About genomiC Testing Results (FACToR) Questionnaire: Development and preliminary validation
Patient safety in genomic medicine: An exploratory study
Patients' choices for return of exome sequencing results to relatives in the event of their death
Return of incidental findings in genomic medicine: Measuring what patients value--development of an instrument to measure preferences for information from next-generation testing (IMPRINT)
Values in translation: How asking the right questions can move translational science toward greater health impact
Informed consent in genome-scale research: What do prospective participants think?
Genomic research and wide data sharing: Views of prospective participants
Race and ancestry in biomedical research: Exploring the challenges
Beyond inclusion: Enacting team equity in precision medicine research
Social and scientific motivations to move beyond groups in allele frequencies: The TOPMed experience
Population genomic screening: Ethical considerations to guide age at implementation
The designated record set for clinical genetic and genomic testing: A points to consider statement of the American College of Medical Genetics and Genomics (ACMG)
Polygenic risk, population structure and ongoing difficulties with race in human genetics
Returning integrated genomic risk and clinical recommendations: The eMERGE study
Clinical, technical, and environmental biases influencing equitable access to clinical genetics/genomics testing: A points to consider statement of the American College of Medical Genetics and Genomics (ACMG)
Community engagement in precision medicine research: Organizational practices and their impacts for equity
Cloud-based biomedical data storage and analysis for genomic research: Landscape analysis of data governance in emerging NIH-supported platforms
Conflating race and ancestry: Tracing decision points about population descriptors over the precision medicine research life course
Interrogating the value of return of results for diverse populations: Perspectives from precision medicine researchers
Risk perception and intended behavior change after uninformative genetic results for adult-onset hereditary conditions in unselected patients
Public perspectives on investigative genetic genealogy: Findings from a national focus group study
Advancing genomics to improve health equity
Managing differential performance of polygenic risk scores across groups: Real-world experience of the eMERGE Network
Offering aggregate results to participants in genomic research: Benefits and challenges
Broad consent for research With biological samples: Workshop conclusions
A conjunctural analysis of the origins of ‘embedded ELSI’ in U.S. genomic medicine
The PRIMED Consortium: Reducing disparities in polygenic risk assessment

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