Towards Health Equity: Prioritizing Community Partnerships in Human Genetics Research

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This webinar series will describe responsible and meaningful community engagement approaches across the research lifecycle, in a manner that addresses health inequalities, avoids potential harms, builds trustworthy relationships, and increases the representation of underrepresented communities in genetics and genomics research.

 

Learning Objectives

  • To identify potential challenges and opportunities of community engagement practices.
  • To learn, through current scenario-based illustrations, how to effectively identify and design trust-building community engagement methods and practices.
  • To identify and learn how to integrate ethical, legal, and social implications (ELSI) frameworks into community engagement methods and practices.

  • Contains 1 Component(s)

    This webinar intends to introduce why community-based participatory research is a recommended approach to community engaged research and provide recommendations preparatory to beginning the research project, such as establishing trusted relationships and working with community partners to address preliminary issues.

    Part 1 of the webinar series, Towards Health Equity: Prioritizing Community Partnerships in Human Genetics Research

     

    This webinar intends to introduce why community-based participatory research is a recommended approach to community engaged research and provide recommendations preparatory to beginning the research project, such as establishing trusted relationships and working with community partners to address preliminary issues.

     

    Learning Objectives

    • To describe why respectful and meaningful community engagement with historically marginalized and underrepresented populations in genetics and genomics research is both scientifically and ethically necessary.
    • To learn about Community Engaged Research (CEnR) principles, methods, and practices to consider in preparation for research, with a focus on ethical, legal and social implications (ELSI) of genomics research.
    • To learn, through current scenario-based illustrations, the complexities in the design of community engagement practices.

    Missed the webinar? Here's a highlight:


    Log in to watch the webinar on-demand and hear more from Barbara Leach and Amy Lemke.

    Amy A. Lemke, PhD, MS

    Professor of Pediatrics, University of Louisville

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

    Amy A. Lemke, PhD, MS, is a 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.

    Barbara Leach

    Family Support Specialist

    UNC School of Social Work, Chapel Hill NC

    Barbara Leach is a Family Support Specialist/Special Projects Coordinator for the Family Support Program and the Family Support Network™ of NC-University Office at the University of North Carolina at Chapel Hill. She has over 35 years of personal and professional experience as a child and family advocate for families with children who have intellectual/developmental disabilities, behavioral health/mental health conditions, and special health care needs. Barbara has provided key leadership in state and national initiatives to improve family engagement and partnership, including serving on the NCGENES genetics project Community Consultation Team, UNC-Chapel Hill and on the national stakeholder advisory committee for the Clinical Sequencing Evidence Generating Research (CSER) Consortium. She is committed to promoting, supporting, and engaging diverse individuals and families in research, policy, and practice.

    Matthew Taylor, MD, PhD (Moderator)

    Professor of Medicine, Director of Adult Medical Genetics Program

    University of Colorado Anschutz Medical Campus

    Dr. Matthew Taylor MD, PhD directs the Adult Medical Genetics clinic that serves adults and families with genetic conditions in the Denver and Rocky Mountain region.  The clinic services include genetic diagnosis, testing, and counseling and is the only such Adult Genetics Clinic in a 7-state area.  Additionally, the clinic serves as a regional hub for recruitment of patients with rare genetic diseases as well as for clinical trials in genetic diseases where novel therapies are now coming online in the trial arena. 

    Dr. Taylor’s research laboratory studies inherited cardiomyopathies, major causes of heart failure and heart transplantation.  The work includes genetic, cell-based, model organism, and bioengineering approaches. He co-directs the International Familial Cardiomyopathy Registry and directs the International Danon Disease Registry. He is also involved in clinical trials for rare diseases including cardiac gene therapy. In 2014, he became Associate Director of Personalized Medicine within the newly minted Biomedical Informatics and Personalized Medicine Center where he developed the IRB protocol and consent for patient enrollment.  The Center is designed to stimulate and enable translational research that promotes the goals of personalized medicine (also referred to as ‘precision medicine’).  In 2021, Dr. Taylor became co-director of the University of Colorado National Organization of Rare Diseases Center of Excellence. The Center is designed to expand awareness, access, knowledge, research, and clinical care for persons and families with rare diseases.


  • Contains 1 Component(s) Includes a Live Web Event on 06/20/2024 at 12:00 PM (EDT)

    The second webinar of the series will continue the conversations from the Part 1 webinar, examining recommendations for researchers to engage communities throughout the research cycle.

    Part 2 of the webinar series, Towards Health Equity: Prioritizing Community Partnerships in Human Genetics Research

     

    The second webinar of the series will continue the conversations from the Part 1 webinar, examining recommendations for researchers to engage communities throughout the research cycle.

     

    Learning Objectives

    • To analyze methods by which researchers can build lasting community relationships utilizing continued engagement through the return of results, publication of findings, and after the work has “concluded”.
    • To learn to foster communication with the community throughout the execution of the research study and adequately address (possibly unforeseen) concerns, using case-based scenarios.

    Joon-Ho Yu, MPH PhD

    Research Assistant Professor of Pediatrics

    University of Washington

    Joon-Ho Yu is a Research Assistant Professor of Pediatrics at the University of Washington School of Medicine; Associate Director of the Institute for Public Health Genetics at the UW School of Public Health; and a member of the Treuman Katz Center for Pediatric Bioethics and Palliative Care at Seattle Children’s Research Institute. Joon is a graduate of Carleton College and received his MPH and PhD in Public Health Genetics from the University of Washington. Joon also serves as Deputy Director and Director of Data, Assessment, Research and Evaluation at the Korean Community Service Center of Seattle. As such, Joon conducts and studies community-centered research on topics such as genome sequencing, big health data, parenting/caregiving and early childhood development, community-based behavioral health, and community safety.

    Rhonda Hamilton, MPA

    Patient Navigator and Community Outreach Coordinator

    Georgetown University

    Rhonda Hamilton, MPA, received her master’s degree in public administration from Southeastern University. She works at Georgetown University’s Ralph Lauren Center for Cancer Prevention as a community outreach coordinator and patient navigator. She was raised in the District and has spent the past 18 years working in the community and advocating on behalf of residents. She also schedules patients for mammography screenings throughout the District and Maryland as a patient navigator.

    Thelma D. Jones, AAS, CHW

    Founder

    Thelma D. Jones Breast Cancer Fund

    Thelma D. Jones is along-time civic activist, a 17-year breast cancer thriver, and the founder ofthe award-winning Thelma D. Jones Breast Cancer Fund with a signature monthlysupport group meeting. Recently, she became an ACS Ambassador for Voicesof Black Women. Retired from the World Bank after more than 33 years as acommunity outreach coordinator and a principal founderof its institutional outreach program, Jones passionately sharesthe message that early detection saves lives and creates a better outcome. Focusing on reducing theincidence and mortality rates of breast cancer in historicallymarginalized populations, she leverages her lived experience andglobal understanding to empower survivors and caregivers with hope,encouragement and resources. Jones is a recipient of the PresidentJoseph R. Biden Presidential Lifetime Achievement Award.

    Calandra G. Whitted, MSPH, DrPH (Moderator)

    Senior Social Scientist at the Meharry-Vanderbilt Alliance

    Vanderbilt University Medical Center

    Dr. Whitted is the Senior Social Scientist at the Meharry-Vanderbilt Alliance. As Senior Social Scientist, Dr. Whitted supports the Vanderbilt Ingram Cancer Center partner of the NCI funded U54 Meharry Vanderbilt Tennessee State Cancer Partnership designed to build research capacity between the institutions to support cancer disparity research. She also serves as evaluation and strategic planning support for the MVA programmatic activities. Her research focuses on public health genomics and community engagement in underrepresented populations. She also is a member of the Center for Health Behavior and Health Education at Vanderbilt University Medical Center. She obtained her Doctor of Public Health degree from Florida A&M University and the Graduate Partnership Program at the National Institutes of Health. She completed her post-doctoral training at the National Human Genome Research Institute in the Social and Behavioral Research Branch at the National Institutes of Health.

  • Contains 1 Component(s) Includes a Live Web Event on 06/27/2024 at 12:00 PM (EDT)

    The third and final webinar of the series will build upon the Part 1 and Part 2 webinars, using case studies to examine how to be successful in engaging the community throughout the research lifecycle.

    Part 3 of the webinar series, Towards Health Equity: Prioritizing Community Partnerships in Human Genetics Research

     

    The third and final webinar of the series will build upon the Part 1 and Part 2 webinars, using case studies to examine how to be successful in engaging the community throughout the research lifecycle.

     

    Learning Objectives

    • To apply the tools gained from the Part 1 and Part 2 webinars to address real case scenarios and illustrate ways (e.g., communication, engagement methods, etc.) to effectively implement the recommendations of the ASHG Guidance.

    Sula Hood, PhD, MPH

    Senior Research Scientist, Center for Communication and Engagement Research

    RTI International

    Dr. Sula Hood is a Senior Research Scientist in the Center for Communication and Engagement Research at RTI International. She is also an adjunct faculty member at the University of North Carolina Gillings School of Global Public Health. Dr. Hood has expertise in designing, implementing, and evaluating public health programs and interventions. Her professional experience includes over 15 years of leading community engaged research studies, with a focus on advancing health equity and improving outcomes among minority and underserved populations. Dr. Hood holds an interest in understanding social network influences on health information sharing and genomic literacy within families. Her research has involved partnering with community stakeholders to deliver family health history education in innovative community contexts, such as intergenerational African American family reunions. Dr. Hood completed a guest researcher residency at the National Human Genome Research Institute at the National Institutes of Health (NIH), and she is an invited member of the CDC National Family Health History Working Group.

    Dr. Hood currently serves as a Co-Investigator on RTI's Engagement and Retention Innovator award from the NIH All of Us Research Program. In this role, she utilizes co-creation approaches to collaborate with community stakeholders to inform the development of culturally relevant strategies that increase All of Us engagement among populations underrepresented in biomedical research.

    Julianne M. O'Daniel, MS, CGC

    Associate Professor, Director of Genetic Counseling

    University of North Carolina at Chapel Hill, Department of Genetics

    Julianne O’Daniel is an Associate Professor and Director of Genetic Counseling in the Department of Genetics at the University of North Carolina at Chapel Hill. She received her undergraduate degree in Biology from UNC Chapel Hill and her master’s degree in Genetic Counseling from the University of Pittsburg. She is board certified by the American Board of Genetic Counseling. Julianne’s career in genomic medicine has spanned across clinical, laboratory, and research perspectives.  She has published 50+ peer-reviewed articles and multiple book chapters with a continual focus on improving clinical access, and broad integration of genomic medicine applications for all populations. As such, she has had the pleasure of engaging with and learning from community and patient stakeholders. 

    Andrew Landstrom, MD, PhD (Moderator)

    Associate Professor of Pediatrics and Cell Biology

    Duke University School of Medicine

    Dr. Landstrom is an Associate Professor of Pediatrics and Cell Biology at Duke University School of Medicine in Durham, North Carolina.  He is a pediatric cardiologist with expertise in heritable arrhythmias and cardiomyopathies.  He leads an NIH-funded basic-translational program which studies how heritable arrhythmias, cardiomyopathies, and congenital heart disease develop with a goal of developing new therapies to treat these life-threatening diseases.  He also leads a clinical research program dedicated to predicting those at risk of developing heritable cardiac disease using tools such as population-based genomic risk prediction.