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DNA Dialogues: Conversations in Genetic Counseling Research

By: Journal of Genetic Counseling (Jehannine Austin Naomi Wagner Khalida Liaquat Kate Wilson and DNA Today’s Kira Dineen)
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  • Summary

  • In DNA Dialogues we dive into the intricate world of genetic counseling research. Join us as we peel back the layers of groundbreaking articles from the Journal of Genetic Counseling, bringing you exclusive discussions with the authors themselves. Each episode sparks a vibrant exchange, exploring the latest discoveries, ethical dilemmas, and technological advances that are shaping the future of medical genetics. From navigating complex testing decisions to building trust with diverse communities, listen in as we unpack the science, challenge assumptions, and celebrate the human connection at the heart of genetic counseling research. So, grab your headphones, unravel the double helix, and prepare to be captivated by the array of voices in DNA Dialogues, a podcast where the blueprint of life meets intimate human conversation.
    Copyright 2024 All Rights Reserved
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Episodes
  • #4 Discussing Gender Inclusive Terminology and Gender-Affirming Hereditary Cancer Care

    #4 Discussing Gender Inclusive Terminology and Gender-Affirming Hereditary Cancer Care
    May 30 2024

    In our fourth episode, we delve into the importance of gender-inclusive language in genetic counseling and the specific challenges transgender and gender-diverse (TGD) individuals face in accessing hereditary cancer care. You can find these articles in a special virtual issue of the Journal of Genetic Counseling which is free and open access for the month of June. You can find the Journal of Genetic Counseling webpage via onlinelibrary.wiley.com or via the National Society of Genetic Counselors website.

    Segment 1 “Use of gender-inclusive language in genetic counseling to optimize patient care”

    Heather Motiff graduated with a B.S. in Psychology from the University of Wisconsin-Whitewater in 2006. She has extensive experience working as a crisis response advocate and co-facilitating support groups for survivors of intimate partner violence. Heather discovered her interest in genetic counseling during her first pregnancy in 2010. She has served as a Community Resource Specialist and contributed significantly to gender-affirming care initiatives during her graduate studies at UW-Madison. Heather is now an oncology genetic counselor at SSM Health Cancer Care in Madison, WI, and is dedicated to providing inclusive, quality healthcare and genetic services.

    In this segment we discuss:

    • Specific examples and terms used in gender-inclusive language.
    • Comfort levels of genetic counselors with using gender-inclusive language.
    • Findings from thematic analyses on the use of gendered language and its impact on patient care.
    • Suggestions for additional training resources for healthcare professionals.

    Segment 2 “Experiences of hereditary cancer care among transgender and gender diverse people: “It's gender. It's cancer risk…it's everything”

    Sarah Roth is a genetic counselor and a PhD candidate in Anthropology at Johns Hopkins University. She is a BRCA1 carrier whose research focuses on the experiences of patients, communities, and providers in cancer care and genomic medicine. Sarah has been a founding editor of Tendon at JHU’s Center for Medical Humanities & Social Medicine, a contributing writer at Synapsis: A Health Humanities Journal, and a recent predoctoral fellow in Bioethics at the National Institutes of Health.

    In this segment, we discuss:

    • Challenges faced by TGD individuals in accessing hereditary cancer care.
    • Participants' perspectives on gendered language in healthcare.
    • Actionable recommendations for healthcare providers to support TGD individuals with hereditary cancer syndromes.

    Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors.

    Stay tuned for the next new episode of DNA Dialogues! In the meantime, listen to all our episodes Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Dialogues”.

    For more information about this episode visit dnadialogues.podbean.com, where you can also stream all episodes of the show. Check out the Journal of Genetic Counseling here for articles featured in this episode and others.

    Any questions, episode ideas, guest pitches, or comments can be sent into DNADialoguesPodcast@gmail.com.

    DNA Dialogues’ team includes Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today’s Kira Dineen. Our logo was designed by Ashlyn Enokian.

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    43 mins
  • #3 Diagnostic Odysseys with Secondary and No Primary Findings

    #3 Diagnostic Odysseys with Secondary and No Primary Findings
    Apr 25 2024
    To celebrate DNA Day we are releasing our April episode exploring concepts related to the diagnostic odyssey, whole genome sequencing, and results returned. Segment 1: A Journey of Hope and Resilience In our first segment, we delve into the research conducted by Celine Lewis, focusing on the emotional impact of receiving a "no primary finding" (NPF) result from genome sequencing. This recent JoGC paper is titled, “The disequilibrium of hope: A grounded theory analysis of parents' experiences of receiving a “no primary finding” result from genome sequencing.” Celine's study uncovers the multifaceted journey of parents grappling with the absence of a definitive diagnosis for their children. Through grounded theory analysis, two primary themes emerge: "Striving to Solve the Unsolved Puzzle" and "Navigating Hope, Lost then Found." These themes encapsulate the oscillating emotions of hope, disappointment, and resilience experienced by parents amidst the diagnostic odyssey. Dr. Celine Lewis is a behavioural scientist working in the field of genetic and genomic medicine. She is currently at University College London Institute of Child Health, and is an NIHR Advanced Fellow. Her work focuses on how patients and families relate to, communicate and make decisions around personal genetic information, and the subsequent behavioural, psychological and social outcomes. Through her research, Celine has worked with a range of key stakeholders including researchers in the UK and abroad, healthcare professionals and policy makers as well as voluntary organisations, patients and families. She is regularly invited to present at UK and international conferences and meetings and is increasingly asked to present her research findings to organisations such as NHS England and the Department of Health. Key Insights from Segment 1: - The importance of understanding the emotional dimensions of genetic testing, especially for families receiving inconclusive results. - The dynamic role of hope as both a motivator and a coping mechanism throughout the diagnostic journey. - Suggestions for pre and post-test counseling strategies to support families navigating genomic testing, emphasizing the significance of managing expectations and fostering adaptive hope. Segment 2: Systematic Review of Secondary Findings In our second segment, we explore a systematic review conducted by Lucas Mitchell and Dr. Amanda Willis, focusing on the uptake and outcomes of returning secondary findings to research participants. This recent JoGC article is titled, “Systematic review of the uptake and outcomes from returning secondary findings to adult participants in research genomic testing.” Through rigorous analysis of existing literature, Lucas and Amanda illuminate key insights into the prevalence of secondary findings and their psychological, medical, and ethical implications. Their review underscores the critical role of researchers in navigating the complexities of result return, highlighting considerations for enhancing participant engagement and support. Lucas Mitchell is a research genetic counsellor at the Garvan Institute of Medical Research in Sydney, Australia. He contributes to the My Research Results genetic counselling platform, an evidence-based service that supports researchers in delivering actionable research genomic findings to participants nationwide. With a Master of Genetic Counselling from the University of Technology Sydney, Lucas is passionate about helping participants and their families in understanding their research findings and facilitating access to ongoing support. Lucas’s current research interests lie within the application of genomics and returning secondary findings, and the intersection of genetic healthcare with diverse communities and improving inclusion and accessibility. Dr. Amanda Willis is a research genetic counsellor at the Garvan Institute of Medical Research. After completing a Master of Genetic Counselling in 2013, Amanda worked as a cancer genetic counsellor in Australia and the UK and completed a PhD in 2018. Amanda’s current work is centred around the My Research Results program, developed to help research participants access their genetic information. Amanda provides genetic counselling to research participants who receive a genetic result and conducts research to understand the experiences of these participants. Through this work, she aims to increase access to genomic information and improve outcomes for research participants and their families. Key Insights from Segment 2: - The significance of secondary findings in research genomic testing and the need for comprehensive strategies to address participant needs. - Key findings regarding the uptake of secondary findings and diverse outcomes experienced by research participants. - Implications for researchers, healthcare providers, and policymakers in optimizing result return processes and promoting ...
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    43 mins
  • #2 Intersection of the Disability Community and Genetic Counseling Training/Practice

    #2 Intersection of the Disability Community and Genetic Counseling Training/Practice
    Mar 30 2024

    In our second episode, we explore two recent articles focusing on the intersection of the disability community and genetic counseling training and practice.

    Segment 1: “Disability education and implications for genetic counselor training”

    Lauren Douglas (she/her) serves as an oncology genetic counselor and supervisor for graduate student rotations at MHealth Fairview in Minneapolis, MN. She received a degree in Genetic Counseling from the University of Texas MD Anderson Cancer Center UTHealth Graduate School of Biomedical Sciences in 2021. Outside of work, she finds joy in practicing yoga, enjoying the outdoors, and cheering on her favorite Minnesota sports teams.

    Chelsea Wagner (she/her) is a seasoned genetic counselor specializing in prenatal and reproductive health. She is the outgoing chair for NSGC's Prenatal Special Interest Group and serves as reproductive health expert for NSGC's media panel. She is currently a Lead Genetic Counselor at BillionToOne. Chelsea identifies as a person with a disability courtesy of a brain injury acquired in 2019 and her experience living with chronic illness for almost two decades.

    Segment 2: “Experiences of genetic counseling students with disabilities and chronic illnesses: A qualitative study”

    Rachel Epstein (she/her) is a 2022 graduate of the Boston University Genetic Counseling Program. She is currently working as a genetic counselor in the Neaman Center for Personalized Medicine at Endeavor Health in Evanston, IL, where she works primarily in adult cancer genetics.

    During the episode we recommending the following resources:

    • NSGC Member Webinar Series: 2023 Community Conversations
    • Disability in Genetic Counseling Group on Instagram @disabilitygc or email disabilitygc@gmail.com

    Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors.

    Stay tuned for the next new episode of DNA Dialogues! In the meantime, listen to all our episodes Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Dialogues”.

    For more information about this episode visit dnadialogues.podbean.com, where you can also stream all episodes of the show. Check out the Journal of Genetic Counseling here for articles featured in this episode and others.

    Any questions, episode ideas, guest pitches, or comments can be sent into DNADialoguesPodcast@gmail.com.

    DNA Dialogues’ team includes Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today’s Kira Dineen. Our logo was designed by Ashlyn Enokian.

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    45 mins
Biological Sciences
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