Webinar Series: Navigating the Use of Population Descriptors in Human Genetics and Genomics Research

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This series of three educational webinars will highlight scientific and ethical, legal and social implications (ELSI) perspectives on why the appropriate and responsible use of population descriptors matters in genomics research. Panelists will provide their unique perspectives and guide group discussion using case studies as examples. 

**Please read through the reading materials in advance of this interactive webinar series.

  • Contains 1 Component(s)

    Part 1 will focus on why the use of population descriptors in genomic and biomedical research is a critical scientific issue with varied ethical, legal, and social implications (ELSI).

    Webinar Series: Navigating the Use of Population Descriptors in Human Genetics and Genomics Research

    Part 1 will focus on why the use of population descriptors in genomic and biomedical research is a critical scientific issue with varied ethical, legal, and social implications (ELSI).

    Learning Objectives:

    1. To describe why the respectful and responsible use of population descriptors is both scientifically and ethically necessary in genomics research.
    2. To identify ELSI frameworks applicable to the use of population descriptors in genomic and biomedical research, and to apply and integrate ELSI and policy considerations to avoid misconduct and unintentional harm.
    3. To effectively navigate the complexities of incorporating the population descriptor recommendations into practice.

    Daphne Martschenko, PhD

    Assistant Professor

    Stanford Center for Biomedical Ethics

    Daphne Martschenko is an Assistant Professor at the Stanford Center for Biomedical Ethics. Her work advocates for and facilitates research efforts that promote the socially and ethically responsible conduct and communication of and public engagement with human genetics and genomics. She is currently co-writing a book (under contract with Princeton University Press) with Sam Trejo, a quantitative sociologist who uses genomic data in his research. The book, titled the “The Acid We Inherit,” is an adversarial collaboration that delves into the debates and controversies surrounding research connecting DNA to social and behavioral outcomes. 

    Genevieve Wojcik, PhD

    Assistant Professor of Epidemiology

    Johns Hopkins Bloomberg School of Public Health

    Dr. Genevieve Wojcik is a genetic epidemiologist and Assistant Professor of Epidemiology at the Johns Hopkins Bloomberg School of Public Health. She holds a BA in Biology from Cornell University, an MHS in Human Genetics/Genetic Epidemiology and a PhD in Epidemiology from Johns Hopkins Bloomberg School of Public Health, and conducted her postdoctoral training at Stanford University. Her research program focuses on understanding the role of ancestry and environment in genetic risk and developing solutions to address health inequities for diverse and admixed groups. Dr. Wojcik was a contributing member of the 2023 NASEM report on the Use of Race, Ethnicity, and Ancestry as Population Descriptors in Genomics Research, and is currently serving on the NASEM Committee on The Use of Race and Ethnicity in Biomedical Research. 

    Rosario Isasi, JD, MPH (Moderator)

    Associate Professor of Human Genetics

    University of Miami Leonard M. Miller School of Medicine

    Rosario Isasi, J.D., M.P.H., is an Associate Professor of Human Genetics at the Dr. J. T. Macdonald Foundation Department of Human Genetics at the University of Miami Miller School of Medicine and Adjunct Professor of Law at UM School of Law. Her research is devoted to identifying and analyzing the social, ethical and policy dimensions of disruptive technologies (e.g., precision, genomics, and regenerative medicine) and is internationally recognized as an expert in   international comparative law, ethics, and health disparities. She holds many leadership roles in major national and international initiatives. As a recognition of her scholarly contributions, from 2017-2019 she was appointed as President’s International Fellow of the Chinese Academy of Sciences.  

  • Contains 1 Component(s)

    Part 2 will expand on the discussions from Webinar Part 1, drawing on examples of genomic research studies using population descriptors to further the understanding of ELSI and policy considerations to avoid misconduct and unintentional harm.

    Webinar Series: Navigating the Use of Population Descriptors in Human Genetics and Genomics Research

    Part 2 will expand on the discussions from Webinar Part 1, drawing on examples of genomic research studies using population descriptors to further the understanding of ELSI and policy considerations to avoid misconduct and unintentional harm.

    Learning Objectives:

    1. To describe approaches and frameworks for applying population descriptors in human genetics & genomics research to different types of research studies.
    2. To recognize and address any limitations to applying these approaches and frameworks in the field.

    Ebony B. Madden, PhD, MS

    Program Director

    National Human Genome Research Institute (NHGRI)

    Dr. Madden is a program director in the Training, Diversity and Health Equity (TiDHE) Office within the Office of the Director of the National Human Genome Research Institute (NHGRI). Prior to this position, she served as a Research Geneticist at the National Heart Lung and Blood Institute (NHLBI), Chief of Staff of the Office of the Director within the National Institute of Environmental Health Sciences (NIEHS), and Program Director in the Division of Genomic Medicine, NHGRI. Her research portfolio includes the Diversity Centers for Genome Research program, the Genome Research Experiences to Attract Talented Undergraduates to the Genomics Fields to Enhance Diversity (GREAT) program, ComPASS, and other grants and programs related to genomics and health equity. Dr. Madden received her B.S. in Biology from the University of North Carolina at Chapel Hill, her M.S. in Genetic Counseling and her Ph.D. in Genetics and Human Genetics from Howard University. Her research interests include population genomics, genomic medicine, complex disease, and health disparities.

    John Novembre, PhD

    Professor, Department of Human Genetics

    University of Chicago

    John Novembre, Ph.D., is a Professor at the University of Chicago in the Departments of Human Genetics and Ecology & Evolution. His research develops computational methods to address a wide range of questions regarding genetic diversity. His work has especially had an impact on the understanding and analysis of geographic patterns in human genetic variation. He recently served on the National Academies of Science, Engineering, and Medicine Committee on the Use of Race, Ethnicity, and Ancestry as Population Descriptors in Genomics Research. He has been awarded as a MacArthur Fellow, Searle Scholar, and Sloan Research Fellow, and his research is supported by the National Institutes of Health.  He also serves as an academic editor for the journal Genetics.  

    Justin Eze Ideozu, PhD (Moderator)

    Senior Scientist in Genomic Medicine

    AbbVie

    Justin Eze Ideozu is a Senior Scientist in Genomic Medicine at AbbVie’s Genetic Research Center and the Founder of MyAfroDNA. Justin’s academic journey began with a B.Sc. in Human Anatomy from the University of Port Harcourt, Nigeria, sparking a lifelong fascination with understanding the complexities of the human body systems. His educational pursuits led him to attain an M.Sc. in Environmental and Public Health and a Ph.D. in Biological Sciences from the University of Salford Manchester, UK. As a Postdoctoral Fellow at Northwestern University, USA, Justin deployed integrated ~omics approaches to define cystic fibrosis genetic disease and its phenotypes. In the industry, Justin serves as a Senior Scientist in Genomic Medicine at AbbVie, where he supports drug discovery efforts across diverse therapeutic areas. Recognizing the critical need for diversity in genomic research, Justin founded MyAfroDNA—a biobank that aims to ensure equitable representation and benefits for individuals of African descent in genomics. Justin has dedicated his career to pushing the boundaries of genomics, promoting diversity in research, and creating a lasting impact on the future of genomics and translational research.  

  • Contains 1 Component(s)

    Part 3 will focus on how the human genetics and genomics community can approach partnerships to better apply the population descriptor recommendations in research studies.

    Webinar Series: Navigating the Use of Population Descriptors in Human Genetics and Genomics Research


    Part 3 will focus on how the human genetics and genomics community can approach partnerships to better apply the population descriptor recommendations in research studies. 

    Learning Objectives:

    1. To describe successful approaches to applying population descriptors respectfully and responsibly.  
    2. To recognize the value of partnerships for responsible use of population descriptors in genomics research. 
    3. To identify emerging areas in ELSI research that could promote better use of population descriptors. 


    Sarah Tishkoff, PhD

    David and Lyn Silfen University Professor Departments of Genetics and Biology

    University of Pennsylvania

    Sarah Tishkoff is the David and Lyn Silfen University Professor in Genetics and Biology at the University of Pennsylvania, holding appointments in the School of Medicine and the School of Arts and Sciences. She is also the Director of the Penn Center for Global Genomics & Health Equity in the Department of Genetics. Dr. Tishkoff studies genomic and phenotypic variation in ethnically diverse Africans. Her research combines field work, laboratory research, and computational methods to examine African population history, the genetic basis of anthropometric, cardiovascular, and immune related traits, and how humans have adapted to diverse environments and diets.  She plays an active role as an advocate for the inclusion of ethnically diverse global populations in human genetics and genomics research.

    Nanibaa’ Garrison (Navajo), PhD

    Associate Professor

    University of California, Los Angeles

    Nanibaa’ Garrison (Navajo), Ph.D. is an Associate Professor at the University of California, Los Angeles. She has appointments in the Institute for Society and Genetics, the Institute for Precision Health, and the Division of General Internal Medicine & Health Services Research. Her research focuses on the ethical, social, and cultural implications of genetic and genomic research with Indigenous peoples. Using community-based research approaches, she engages with Tribal communities to develop policies and guidance regarding genetic and genomic research.

    Amy A. Lemke, PhD, MS (Moderator)

    Associate Professor of Pediatrics, University of Louisville

    Director of Community Engaged Research, Norton Children’s Research Institute

    Amy A. Lemke, PhD, MS, is an Associate Professor of Pediatrics in the Division of Clinical and Translational Research at the University of Louisville. She is also Director of Community Engaged Research at Norton Children’s Research Institute, affiliated with the University of Louisville. As Director, she leads a Research Core to support investigators in the use of qualitative approaches, survey design, and mixed methods in their research programs. Dr. Lemke is experienced in conducting multi-site studies aimed at assessing genomic research and clinical innovations and the impact on individuals, providers, and healthcare organizations. Her expertise includes the use of community engaged research strategies, such as community-based participatory research and deliberative engagement, to collaborate with underrepresented and minoritized populations in genomic testing research. Dr. Lemke’s current research focuses on: outcomes of genomic screening in a variety of settings; the utility of genomic testing for individuals, caretakers and providers; and factors that influence genomic test access and results utilization in varied populations. Additionally, she leads practice guidance and policy efforts in addressing underrepresentation in genomics research and genomics-enabled healthcare.