Research

Research in the division focuses on conceptual, empirical, and policy-related bioethics research to address emerging challenges in biomedical research and health care. Topic areas include gene sequencing and genetic testing, machine learning and medical decision-making, big data and the learning health system, and access to and equity of care. Our goal is to conduct and facilitate innovative, high-impact empirical bioethics research across the University.

Our current research projects are detailed below. Please also see our Publications.

Research Projects

The Ethics of Inclusion: Diversity in Precision Medicine Research

Our study aims to take advantage of the proliferation of diversity and inclusion practices to study their heterogeneity, commonalities, and effects on diversifying participation in PMR.

The Ethics of Inclusion: Conceptualizing Diversity in Genomics Research

This project aims to provide a conceptual framework of diversity that is multi-disciplinary and takes into account the historical and social context in which diversity is invoked in genomics.

The Center for ELSI Resources and Analysis: ELSIhub

ELSIhub's mission is to enhance the production and use of ELSI research by the ELSI community and other stakeholders.

Understanding the Expectations and Needs of Diverse Communities for Navigating Research Results

The project aims to identify underrepresented patients' genetic result preferences and their needs for follow-up care.

Disability, Diversity and Trust in Precision Medicine Research: Stakeholders Engagement

Our study engages with people with mobility, visual and hearing disabilities across racial/ethnic communities and with translational genomic researchers to close this gap.

Organizational and Cultural Dynamics in Genomics Companies: Industry Engagement in Navigating Social and Ethical Issues

This study leverages its descriptive examination of stakeholder perspectives to then inform normative analyses and participatory policy and governance planning.

Evidence-based Policy Recommendations to Address Bioethical Challenges in the Return of Genetic Results in Nephrology

Our aims are to identify challenges in returning genetic results in nephrology research and develop recommendations through an iterative process.

Leveraging Tumor Registries and Pathology Specimens to Facilitate Genetic Testing and Tracebackfor Ovarian Cancer

Feasibility evidence for traceback testing using tumor registries and pathology samples is crucial for future program implementation beyond ovarian cancer.

Including Adults with Intellectual Disability in Precision Medicine Research – Project ENGAGE

This research involves collaborating with adults with intellectual disability for the first time to address consent and inclusion challenges in precision medicine research.

Blind/Disability and Intersectional Biases in E-Health Records (EHRs) of Diabetes Patients: Building a Dialogue on Equity of AI/ML Models in Clinical Care

This study uses community research to explore disability, racial, and gender biases in EHRs of blind and nonblind diabetes patients.

Leadership in the Equitable and Ethical Design of Science and Engineering

The project aims to develop guidelines for forming collaborative teams in science, fostering equitable and ethical research in science and engineering.

The VALUES Project

Perspectives of Diverse Patients on Precision Medicine Research

The VALUES project investigates the perspectives of African American and non-Hispanic White patients, as well as recent immigrant groups understudied in ELSI research.

Just Inclusion and Equity: Negotiating Community-Research Partnerships in Genomics Research (JUSTICE)

This study aims to investigate facilitators and barriers to long-term equitable partnerships in genomics research between communities and research institutions.

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