PRESENTATION TITLE

Data Ethics in Healthcare: Building Ethical Foundations for AI and Big Data

PRESENTERS
Isa Houwink, M.D., Ph.D.

Agnieszka Buelens

Jason Greenwood, M.D., M.S.

PJ Wall, Ph.D.

Barbara Prainsack

Georgios Exarcharkis

PRESENTER BIO

Isa Houwink, MD, PhD is a Family Medicine physician and Associate Professor of Family Medicine at Mayo Clinic, where she also serves as a faculty member in the Biomedical Ethics Program. With a background in clinical genetics, public health, and primary care education, her work centers on the ethical integration of genomic medicine, pharmacogenomics, and artificial intelligence into everyday clinical care. Dr. Houwink has led national and international efforts to advance genetic literacy, data governance, and responsible AI implementation, including her role in the Eurolife DATAETHICS consortium. Her current research focuses on developing ethical frameworks for early disease detection—such as familial hypercholesterolemia, cancer, and hemoglobinopathies—and for preventing adverse drug reactions through preemptive pharmacogenomic testing, leveraging AI and biomedical big data in primary care.

Agnieszka Buelens is the coordinator of DATAETHICS and Eurolife, with extensive experience in healthcare management and strategy. She currently leads projects at the University Medical Center Gottingen, University of Gottingen, focused on addressing the ethical challenges associated with Artificial Intelligence (Al) and Biomedical Big Data (BBD). As the coordinator of a prominent European strategic alliance, Agnieszka navigates the complex ethical landscapes of Health and Life Sciences related to BBD, contributing significantly to the responsible development and application of emerging technologies in healthcare. Her work includes guiding the implementation of scientific networks, fostering collaborations with industry leaders, researchers, and policymakers, and managing large international healthcare projects. Agnieszka is dedicated to providing practical tools and guidelines for the ethical collection, management, and use of BBD, ensuring the sustainable impact of these guidelines in the rapidly evolving field of biomedical data. She is deeply committed to the intersection of ethics, technology, healthcare, and human rights, making lasting contributions to the ethical development of Al and BBD within the scientific community and beyond. Agnieszka holds an MSc in International Politics from SOAS, University of London, where she studied Democracy, Human Rights, and humanitarian interventions in the global South.

Barbara Prainsack is a professor at the Department of Political Science at the University Vienna, where she also directs the Centre for the Study of Contemporary Solidarity (CeSCoS). Her work explores the social, ethical, and regulatory dimensions of data-driven practices in biomedicine and forensics, as well as practices and institutions of solidarity in medicine and beyond. She holds honorary positions at the School of Social and Political Sciences at the University of Sydney and at the Centre for Health, Law, and Emerging Technologies (HeLEX) at the University of Oxford. Her latest books are: The Pandemic Within: Policy Making for a Better World (with H. Wagenaar, Policy Press, 2021), and Personalized Medicine: Empowered Patients in the 21st Century? (New York University Press, 2017). A new monograph on States of Solidarity: How to Build a Society is under contract with Oxford University Press. Barbara is also involved in policy-related work, e.g. as Chair of the European Group on Ethics in Science and New Technologies which advises the European Commission.

Georgios is a Lecturer at the University of Bath, working on interpretable and probabilistic machine learning models, with a particular focus on invariance in high-dimensional settings. His research spans Machine Learning, Theoretical Neuroscience, and Data Science, with applications in Neuromorphic Engineering, Health Science, and Quantum Chemistry. Previously, he was a Research Scientist (chargé de recherche) at IHU Strasbourg and a postdoctoral researcher at lnstitut de la Vision and the DATA team at École Normale Supérieure. He received his Dr. rer. nat. from the University of Oldenburg, with doctoral research conducted at the University of Frankfurt, UC Berkeley's Redwood Center for Theoretical Neuroscience, and the University of Oldenburg. He holds an M.Sc. in Computational Science from Frankfurt University and a Diploma in Mathematics from Aristotle University of Thessaloniki.

Dr P.J. Wall is Head of Research and Innovation at Technological University Dublin, and Adjunct Professor in Trinity College Dublin (TCD). He lectures on the topics of ethics, AI ethics, and global development. Dr. Wall holds various visiting Professor positions including with the University of Manchester UK and the Indian Institute of Technology Jodhpur, India. Dr Wall has organised and chaired many international conferences and is currently Senior Editor of the Electronic Journal of Information Systems in Developing Countries (EJISDC) and the Information Technology for Development Journal. Dr Wall’s primary research interests focus on AI, AI ethics, and sustainability. He has a particular interest in the ethics of leveraging AI to address sustainability challenges in different social and cultural contexts in both the Global North and the Global South. Another main focus of Dr Wall’s work is digital innovation for healthcare in the Global South and the ethics of using AI and mobile technologies in this context.

Jason Greenwood, MD MS is a Senior Associate Consultant in the Mayo Clinic Department of Family Medicine in Rochester, Minn., and an Assistant Professor/Lecturer at the Mayo Clinic College of Medicine and Science who is board-certified Clinical Informatics and has industry experience in computer engineering. He is committed to driving primary care adoption and integration of technology through the development and delivery of new tooling, both within and external to EHR, including AI/ML models. He also serves on the Family Medicine Department iLab team, Director of Clinical Informatics and Artificial Intelligence for RST Family Medicine, Chair of the Plummer Chart Self Service Reporting Subcommittee, Chair of the Software as a Medical Device (SaMD) Advisory Team, Member of the Data Governance Committee, Member of the FHIR (Fast Healthcare Interoperability Resources) Oversight Team, Member of the Enterprise AI Translational Advisory Board, and Member of the Family Medicine Model Unit Design Team. He works with these groups and external companies to develop and promote innovative tools and designs that improve primary care providers' workflow and efficiency and decrease chances of burnout with the goal of saving providers hundreds of hours of time annually in chart review, inbasket work and documentation while simultaneously improving patient outcomes.

VIEWING LOCATIONS

LEARNING OBJECTIVES
 

Upon completion of this activity, participants should be able to:

1. Identify key ethical challenges posed by the use of AI and biomedical big data in healthcare, including bias, transparency, data misuse, and informed consent.

2. Describe the structure, goals, and transnational relevance of the Eurolife DATAETHICS framework, and explain how it can inform ethical practices in clinical, educational, and policy settings.

3. Apply core data ethics principles to case examples involving AI and big data in primary care genomics, with a focus on equitable implementation in early disease detection and prevention.

ATTENDANCE / CREDIT
Text the session code (provided only at the session) to 507-200-3010 within 48 hours of the live presentation to record attendance. All learners are encouraged to text attendance regardless of credit needs. This number is only used for receiving text messages related to tracking attendance. Additional tasks to obtain credit may be required based on the specific activity requirements and will be announced accordingly. Swiping your badge will not provide credit; that process is only applicable to meet GME requirements for Residents & Fellows.

TRANSCRIPT
Any credit or attendance awarded from this session will appear on your Transcript.

For disclosure information regarding Mayo Clinic School of Continuous Professional Development accreditation review committee member(s) and staff, please go here to review disclosures.

QUESTIONS?
Contact: Laura Inman (Mayo Clinic Directory - Person Detail) and Brandon Le, CAPM® (Mayo Clinic Directory - Person Detail)