EFF Resources - Rigor, Reproducibility and Responsibility: ELSI Questions in Population Data Practices
Session Title: Rigor, Reproducibility and Responsibility: ELSI Questions in Population Data Practices
Date and time: Friday, May 13, 2025 | 12pm ET US / 9am PT US
Moderator: Aliya Saperstein, PhD
Presenters: Anne Flanagin, RN, MA, FAAN & Genevieve Wojcik, PhD, MHS
CERA Coordinator:
Staff: David Lamb, Faryn Fairweather, Grace Morris
Biographies
MODERATOR: Aliya Saperstein, PhD
Link to biography: https://sociology.stanford.edu/people/aliya-saperstein
Aliya Saperstein, PhD is the Benjamin Scott Crocker Professor in human biology and a professor of sociology at Stanford University. Saperstein’s research focuses on the conceptualization and measurement of human categories of difference, such as race/ethnicity and sex/gender, and the consequences of these methodological decisions for studies of stratification and health disparities, including in the field of precision medicine. Dr. Saperstein served on National Academies committees that produced the consensus study reports Rethinking Race and Ethnicity in Biomedical Research (2024) and Measuring Sex, Gender Identity and Sexual Orientation (2022). Her scholarship has been honored with multiple article awards and the Early Achievement Award from the Population Association of America. Saperstein has a PhD in sociology and demography from University of California-Berkeley.Racial Studies, among other venues, and for general science audiences in Science, the Proceedings of the National Academy of Sciences and PLoS One. It also has been recognized with multiple article awards, and gained attention from national media outlets, including NPR (twice) and The Colbert Report.
PANELIST: Genevieve Wojcik, PhD, MHS
Link to biography: https://publichealth.jhu.edu/faculty/3926/genevieve-wojcik
Dr. Wojcik is an Assistant Professor of Epidemiology at the Johns Hopkins Bloomberg School of Public Health in Baltimore, Maryland. As a statistical geneticist and genetic epidemiologist, her research focuses on method development for diverse populations, specifically in mixed populations. As the majority of genomic research is conducted in populations of European descent, many of the tools and frameworks utilized are optimized for homogeneous populations. However, the largest minority groups within the United States are admixed, drawing recent genetic ancestry from two or more continental populations. Many of her efforts focus on improving statistical methods for complex trait mapping and polygenic risk scores for these populations to address existing health inequities and ensure downstream translation for all.
The second arm of her research program focuses on the genetic susceptibility to infectious disease and vaccine response, with an eye towards host-pathogen co-evolution. This is a natural complement to her work in diverse populations as the burden of infectious disease morbidity and mortality is predominantly in non-European populations.
She is currently a member of numerous NIH consortia, including the Population Architecture using Genomics and Epidemiology (PAGE) Study, the Genome Sequencing Program (GSP), the Clinical Genome Resource (ClinGen), and the Environmental influences on Child Health Outcomes (ECHO) program, as well as several international collaborations.
PANELIST: Annette Flanagin, RN, MA, FAAN
Link to biography: https://stm-assoc.org/people/annette-flanagin/
Annette Flanagin, RN, MA, FAAN, is Executive Managing Editor and Vice President of Editorial Operations, for JAMA (Journal of the American Medical Association) and the JAMA Network, and Executive Editor, JAMAevidence. She directs the editorial operations, content management, systems, editing, and services and author outreach programs for the JAMA Network.
Before joining JAMA, Ms. Flanagin held editorial positions with other journals published for health care professionals, and before that, she practiced cardiology nursing. She is a graduate of Georgetown University, with a BS in nursing and an MA in English Literature. Ms. Flanagin is Past President of the Council of Science Editors (CSE), is a faculty member for the CSE Short Courses on Publication Ethics and Manuscript Editing, and was given the CSE Award for Meritorious Achievement in 2018. She also serves as the Executive Director of the International Congresses on Peer Review and Scientific Publication and as Co-Director of the African Journal Partnership Program and is a Fellow in the American Academy of Nursing.
Ms. Flanagin has co-developed a number of guidelines and policies to guide authors, editors, and publishers in scientific publication and is a committee member and author of the AMA Manual of Style: A Guide for Authors and Editors. She participates in research, lectures, and publishes on issues related to scientific publication for authors, editors, and publishers.
Resources Shared by the Panel
Genevieve Wojcik, PhD, MHS
[SLIDE 1]
- NASEM Report, Using Population Descriptors in Genetics and Genomics Research: A New Framework for an Evolving Field
- NASEM Report, Rethinking Race and Ethnicity in Biomedical Research
[SLIDE 6]
[SLIDE 8]
[SLIDE 10]
[SLIDE 11]
Annette Flanagin, RN, MA, FAAN
[SLIDE 3]
[SLIDE 4]
[SLIDE 7]
[SLIDE 13]
[SLIDE 14]
- NASEM Report, Using Population Descriptors in Genetics and Genomics Research: A New Framework for an Evolving Field
- Guidance on use of race, ethnicity, and geographic origin as proxies for genetic ancestry groups in biomedical publication:
[SLIDE 16]
[SLIDE 17]
[SLIDE 18]
[SLIDE 19]
CERA Resources
The American Journal of Bioethics now welcomes proposals for target articles related to ELSI Friday Forum topics, including the topic today and those explored in future forums. Learn more about submission instructions and monthly deadlines here.
Upcoming events that you can now register for:
- Link to register for July’s EFF Session Biosecurity in the age of AI and genomics: https://us06web.zoom.us/meeting/register/3mkcNCKeRrmVRnVrUhiZHg
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