All Together Now: Data Work to Advance Privacy, Science, and Health in the Age of Synthetic Data

Workshop Description

Transparency alone is insufficient to bridge the gap between data practices and public understanding in an era of synthetic data and artificial intelligence. “Data work” is needed to have scientific data be deemed trustworthy, meaningful and actionable–not only for scientists but also for the individuals from whom those data were derived or to whom those data relate. This workshop is intended to nurture a discussion of these issues and describe the interdisciplinary competencies necessary to become equipped to embed ethical, legal and social considerations into their research.

Agenda

Contacts: Lindsay Fernandez-Rhodes, PhD (fernandez-rhodes at psu.edu) and Jennifer K. Wagner, JD PhD (jkw131 at psu.edu)

The 3-hour workshop will consist of three parts:

Structure

· Part 1: We will begin the workshop with presentations from four experts, Randi Foraker, PhD; Jason Moore, PhD; Anjali Deshmukh, MD, JD; and John Wilbanks, who regularly utilize synthetic data, digital twins or are involved in data governance. After a presentation from each scholar, Lindsay Fernandez-Rhodes, PhD will facilitate a panel discussion around the topic of what data scientists in this area might need or want from ELSI scholars to improve their work and its impact on the public.

· Part 2: Will focus on ethics and data communication with five renowned scholars in community engagement, ethics and science communication: Meg Doerr, MS; Maile Tauali‘i, PhD; Melissa Creary, MPH, PhD; Jasmine McNealy, PhD, JD; and Samira Kiani, MD. At the beginning of this section, Meg Doerr, MS will facilitate an interactive discussion of how community harms can be identified and addressed through improved community-engagement.

· Part 3: After all scholars have presented, Jennifer Wagner, JD, PhD will facilitate a discussion panel about what they would like to see from data scientists who use synthetic data in the near future. Finally, all contributors will be invited to the floor for a final question and answer session co-led by the organizers.

Learning Objectives

By the end of the workshop participants will have gained additional:

· Experience in understanding how new data technologies that use obfuscation are being implemented in the biomedical sciences,

· Awareness of the potential opportunities and concerns related to these practices with respect to participant and community engagement, and

· Exposure to the best practices for fostering community engagement and science communication, while simultaneously embracing these new data practices.

Presenter Information

· Randi Foraker, PhD, MA, FAHA, FAMIA, FACMI, Professor of Medicine within the Division of General Medical Sciences at Washington University in St. Louis.

· Jason Moore, PhD, FACMI, FIAHSI, FASA, Professor and Chair of the Department of Computational Medicine at Cedars-Sinai Medical Center.

· Anjali Deshmukh, MD, JD, Assistant Professor of Law at Georgia State University.

· John Wilbanks, Head of Product, Data Sciences Platform at the Broad Institute of Massachusetts Institute of Technology and Harvard University.

· Meg Doerr, MS, LGC, Director at Sage Bionetworks.

· Maile Tauali‘i, PhD MPH, Collaborative Investigator, Hawaii Permanente Medical Group.

· Melissa S. Creary, PhD, MPH, Assistant Professor of Health Management and Policy and Assistant Professor of Global Public Health at the University of Michigan.

· Jasmine McNealy, PhD JD, Associate Professor in the Department of Media Production, Management, and Technology.

· Samira Kiani, MD, Associate Professor of Pathology and Bioengineering at University of Pittsburgh.

Workshop Organizers

· Lindsay Fernandez-Rhodes, PhD, MSPH, Assistant Professor of Biobehavioral Health at Penn State University, conducts interdisciplinary research to examine how biologic factors (i.e. genetic, epigenetic) and social determinants can interact and compound each other’s effect on complex diseases, namely obesity, cardiometabolic or reproductive health. She has published 50+ articles in the areas of genetic, social epidemiology and health disparities. She is MPI on a R01 to conduct genome-wide association studies of cardiovascular diseases and collect gene expression profiles in Hispanic/Latino populations. More recently she was awarded R21 to conduct secondary data analyses of socio-epigenomic loci of obesity. She was awarded one of two inaugural Early Career Investigator Awards by ASHG’s Human Genetics and Genomics Advances for her work promoting genomic studies of understudied and marginalized populations. She currently serves as an Associate Editor in Applied Genetic Epidemiology for Frontiers in Genetics. She is a member of the Diversity and Inclusion committee at the Society of Epidemiologic Research, which has allowed her analyze society-level survey data to describe how structural determinants of health also impact the public health workforce and COVID-19 related experiences of research active epidemiologists.

· Jennifer K. Wagner, JD, PhD, Assistant Professor of Law, Policy, and Engineering and Anthropology at Penn State University, is an expert in ethical, legal, and social implications (ELSI) research including matters of privacy and nondiscrimination rights as well as the international human right to science as they relate to two technical domains (genetic/omic and digital health technologies). She has contributed to human-centered design and participant engagement for the NIH All of Us^SM Research Program and Geisinger’s MyCode^(R) Community Health Initiative. She has published more than 65 articles, and her work has been cited by the U.S. Supreme Court in a landmark case involving genetic privacy. Her research has been funded through several NIH awards, including relevant K99/R00 and R01 projects funded by NHGRI, bioethics administrative supplements funded by NIH OD/NIDCR and NIH OD/NIBIB, and her current R21 award from NIH OD/NIBIB for “Bioethical, Legal, and Anthropological Study of Technologies (BLAST).” She currently serves as an Associate Editor for Human Genetics and Genomics Advances, as a member of the Pennsylvania Bar Association’s Cybersecurity and Data Privacy Committee; and as a member of the founding board of directors for DNA Bridge (a 501(c)(3) organization). Through her research and other professional experiences, she has observed a syndemic building from existing health disparities and emerging data disparities, associated data justice vulnerabilities (such as hyper-surveillance of the data rich and hypo-surveillance of the data poor), and potential opportunities to promote equity (through, for example, community engagement; responsible use of synthetic data and digital twins; and open science initiatives).