All Access DNA (allaccessdna)
Explorez tous les épisodes de All Access DNA
| Date | Titre | Durée | |
|---|---|---|---|
| 25 Feb 2025 | When is rare disease not so rare? | 00:39:43 | |
In this conversation, Susanna Smith shares her personal experience with CADASIL. The discussion explores the evolving definitions of rare diseases, the importance of accurate classification, and the implications for research and treatment. We cover how insights from rare diseases can inform our understanding of more common conditions. Susanna discusses the complexities of living as a 'previvor'—someone at risk for genetic conditions without symptoms. She explores the emotional and practical implications of genetic testing, the challenges of navigating healthcare and insurance, and the importance of patient advocacy. Susanna also shares insights from her podcast, 'Genetic Frontiers,' which delves into the multifaceted impact of genetic information on society. Key Takeaways
Susanna J. Smith, MPH, is the founder & host of Genetic Frontiers, a podcast about the promise, power, and perils of genetic information. As a journalist and researcher, she writes about the future of medicine, genetics, and technology in healthcare. She is also a previvor of a rare, genetic disease and working on a book project about negotiating the healthcare system as a previvor. Connect with her at geneticfrontiers.org or on LinkedIn @GeneticFrontiers. Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals. Here are more resources related to today’s topic:
Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health. The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ.
| |||
| 20 Nov 2024 | Introducing All Access DNA | 00:00:48 | |
What is DNA anyway? Should I consider genetic testing? Can my genes tell my future? All Access DNA answers the questions you have about genetics, healthcare, and popular issues in precision medicine as it relates to our daily lives. We may even veer into territory that is no longer science fiction but science reality. Host Kate Wilson utilizes her genetic expertise and experience to interview leaders and specialists in genomic medicine and research. Join us as we empower everyone to know more about DNA in an entertaining format. New episodes every Tuesday! Learn more (and stream episodes) at allaccessdna.podbean.com. You can contact the show at AllAccessDNA@gmail.com or follow us on Instagram (at)AllAccessDNA Copyright Constellation Genetics, LLC 2024
| |||
| 31 Dec 2024 | Coming Soon- All Access DNA | 00:01:43 | |
For more information about this episode, visit allaccessdna.podbean.com, where you can also stream all episodes of the show. This link is also in the show notes for easy access.
Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com
Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health.
Please rate and review the podcast on Apple, Spotify, or wherever you listen. This helps other people, like you, discover the show.
Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals.
The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ.
Thanks for listening! And join us next time!. | |||
| 11 Feb 2025 | Should I consider genetic testing for dilated cardiomyopathy? | 00:38:32 | |
In today’s episode, Greg Ruf (he/him) talks about his diagnosis of dilated cardiomyopathy, genetic testing, heart failure, and patient advocacy. He explains the formation of the Dilated Cardiomyopathy Foundation, emphasizing the need for awareness, education, and support for patients. The discussion also highlights the genetic factors associated with the disease, the challenges in diagnosis, and the critical importance of genetic testing to identify at-risk individuals. Greg also addresses the barriers to awareness and testing in the medical community, advocating for better recognition and understanding of genetic cardiomyopathy. He highlights the necessity for patients to be proactive about their health and to seek genetic testing, especially if there is a family history of heart disease. Key Points:
In 2017, Greg founded the DCM Foundation dedicated to helping patients and families that have dilated cardiomyopathy (DCM), following his own diagnosis with the disease and discovery that he carried genetic mutations linked to DCM. As a result of the disease, Greg experienced heart failure and had a heart transplant in 2021. He has served as the organization’s executive director and board president since the organization’s establishment. He also created the Genetic Cardiomyopathy Awareness Consortium (GCAC) in 2023 which includes eight patient groups (WomenHeart, Mended Hearts, DCM Foundation, HCMA, SADS, Children’s Cardiomyopathy, LMNA Cardiac, Team Titin and Danon Foundation) to raise the awareness that genetics plays in cardiomyopathy and get more patients and family members genetically tested. Greg has leveraged more than 30 years of experience as a successful entrepreneur to build the DCM Foundation. In addition to directing the organization, he also advises entrepreneurs of small businesses and serves as a subject matter expert on global recruiting trends for major business publications, having authored several white papers in this area. Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals. Here are more resources related to today’s topic, dilated cardiomyopathy.
Any inquiries on this podcast can be sent to AllAccessDNA@gmail.com Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health. The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. | |||
| 07 Jan 2025 | What does a geneticist do? | 00:47:59 | |
In this episode, Dr. Anna Hurst discusses the multifaceted role of geneticists in healthcare, the diagnostic process for genetic conditions, and the importance of understanding dysmorphology. She explains the evolution of genetic testing, the significance of genetic counseling, and the challenges faced in the field, including insurance issues. She shares her personal journey to becoming a geneticist, emphasizing the importance of specialized training and the need for more professionals in the field.
On This Episode We Discuss:
Anna C.E. Hurst, MD, MS, is an associate professor of medical genetics in the department of genetics at the University of Alabama at Birmingham and an adjunct faculty member at the HudsonAlpha Institute for Biotechnology. She trained as a genetic counselor at the University of South Carolina School of Medicine (Columbia) and then completed her medical degree at the Medical University of South Carolina (Charleston). She is a board-certified pediatrician who completed pediatrics residency at Wake Forest Baptist Health (Winston-Salem, NC) and a medical genetics residency at UAB. Hurst is a clinician for the UAB Undiagnosed Disease Program, skeletal dysplasia clinic, and general genetics, and she provides genetic inpatient hospital consultations for patients at UAB and Children’s of Alabama. Her clinical interests include dysmorphology and congenital anomaly syndrome delineation, and she serves on the Scientific Advisory Board for Facial Dysmorphology Novel Analysis (FDNA). Her research focuses on expanding the availability of genomic sequencing for children with complex healthcare needs and incorporating phenotypic information into the interpretation of genomic data.
Please subscribe to this podcast on Apple Podcasts, Spotify, or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast player by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com
Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals.
Here are more resources related to today’s topic, “What Does a Geneticist Do?”
Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com
Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health.
The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. | |||
| 01 Apr 2025 | Cancer & Chemo: Could DPYD testing save lives? | 00:42:51 | |
In today’s episode, Karen Merritt shares her personal journey of advocacy for DPD deficiency awareness following her mother's tragic experience with chemotherapy. The discussion delves into the importance of genetic testing for DPYD mutations before administering certain chemotherapy drugs, the challenges in raising awareness among healthcare professionals, and ongoing advocacy efforts to include DPYD testing in national guidelines. The conversation highlights the critical need for patient education and informed decision-making in cancer treatment as well as updates in guidelines to ensure patient safety. Takeaways:
Karen Merritt is a passionate and dedicated patient advocate who turned her personal tragedy into a mission to save lives. After losing her mother in 2014 due to fatal toxicity from her first infusion of 5-FU chemotherapy, a result of not being tested for DPD (dihydropyrimidine dehydrogenase) deficiency beforehand, Karen committed herself to raising awareness about the importance of pretesting for DPD deficiency before the administration of fluoropyrimidine-based chemotherapy. Karen is a founding member of Advocates for Universal DPD/DPYD Testing (AUDT), an organization focused on promoting mandatory pretesting to ensure patient safety and prevent chemotherapy-induced toxicities & fatalities. She actively engages with healthcare professionals and institutions to emphasize the need for personalized cancer care that includes pretreatment DPD testing. In addition to her work with AUDT, Karen serves as a Patient Representative for ClinGen PGx Working Group and the Standardizing Laboratory Practices in Pharmacogenomics (STRIPE) Collaborative Community. Her role in these groups reflects her commitment to improving clinical practices and standardizing testing protocols for better patient outcomes. Non-profit website is www.test4dpd.org We are also on LinkedIn and Facebook as Advocates for Universal DPD/DPYD Testing. X and instagram: test4dpd
Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals. Here are more resources related to today’s topic:
Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health. The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. | |||
| 11 Mar 2025 | Who has surgery to prevent colon cancer? | 00:36:29 | |
In this episode, Dan “Dry Dock” Shockley shares his journey with attenuated familial adenomatous polyposis (AFAP), a hereditary condition that increases the risk of colon cancer. He discusses the discovery of his condition, the importance of genetic counseling, and his proactive approach to managing his health. Dan emphasizes the importance of advocacy, education, and the need to destigmatize living with an ostomy. He talks about the role of humor and resilience in facing health challenges and highlights his commitment to educating medical professionals about rare diseases. His mantra, 'Always forge ahead with a purpose,' encapsulates his approach to life and advocacy. Takeaways:
Dan is a retired Navy, Operation Desert Storm, Enduring and Iraqi Freedom veteran. He is a 13 year hereditary colon cancer syndrome WARRIOR. Dan was diagnosed with attenuated FAP, Variant c.2252.del, after his first and only colonoscopy at age of 51, and he was asymptomatic with no family history. Dan is a live-case presentation for the Stanford School of Medicine, Molecular Foundations of Medicine course and Stanford MS Program. He is also a virtual live-case presentation for the Harvard Medical School, Genomes2People Research Program and a patient advocate for the American Society of Clinical Pathology (ASCP). Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals. Here are more resources related to today’s topic:
Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health. The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. | |||
| 21 Jan 2025 | Do I need prenatal genetic screening? | 00:29:10 | |
In this conversation, Blair Stevens, a prenatal genetic counselor, discusses the importance of prenatal genetics, focusing on screening and testing options available to expectant parents. The conversation covers the differences between screening and diagnostic testing, the types of conditions that can be detected, the accuracy of tests like NIPT or cell free DNA screening, and the role of genetic counselors in guiding families through the process. Additionally, the discussion touches on the emotional aspects of receiving test results and the importance of understanding insurance coverage for these tests.
On This Episode We Discuss: Key Takeaways:
Blair K. Stevens, CGC, is a board-certified genetic counselor with over 15 years of experience in reproductive genetics. Blair has a special interest in prenatal genetic screening and testing and counseling families with fetal anomalies identified on ultrasound. Blair is passionate about helping families understand and adjust to unexpected prenatal diagnoses. Blair is an associate professor at McGovern Medical School at The University of Texas Health Science Center at Houston (UTHealth Houston) and serves as a clinical supervisor and research mentor for genetic counseling students, maternal fetal medicine fellow, pediatric genetics residents, and obstetrics and gynecology residents. She also serves as the Director of Prenatal Genetic Counseling Services. Please subscribe to this podcast on Apple Podcasts, Spotify, or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com
Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals.
Here are more resources related to today’s topic, prenatal genetic screening.
Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health. The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. | |||
| 04 Feb 2025 | Are Leukemia and Lymphoma Hereditary? | 00:41:34 | |
In this conversation, Sarah Bannon discusses the complexities of inherited blood cancers, particularly leukemia, and the evolving role of genetic counseling in understanding and managing these conditions. She highlights the historical context of genetic research in blood cancers, the importance of family history in assessing risk, and the advancements in genetic testing that have led to better identification of hereditary cancer syndromes. The conversation also covers the implications of genetic testing results for patients and their families, the challenges faced in the field, and the rewarding aspects of working in this emerging area of genetic counseling. On This Episode We Discuss:
Sarah is a genetic counselor with over 14 years of experience in cancer genetics, specifically leukemia and lymphoma. She is a widely sought expert on hereditary predispositions to hematologic malignancy, which has been the focus of her clinical care and research. Sarah works as a genetic counselor at the National Institute of Allergy and Infectious Diseases (NIAID). Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Remember to rate and review to help others find us. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals. Here are more resources related to today’s topic, blood and bone marrow cancers:
Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health. The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. | |||
| 18 Mar 2025 | Can someone own my genes? | 00:39:25 | |
In this conversation, Ellen Matloff, a certified genetic counselor and CEO of My Gene Counsel, discusses the implications of gene ownership and patents, particularly focusing on the BRCA gene patent case against Myriad Genetics. She shares her journey from being a cancer genetic counselor to becoming an individual plaintiff in the gene patent case. We discuss the challenges faced in the legal battle and the impact of the Supreme Court's decision in 2013. The discussion highlights the importance of access to genetic testing, the intersection of law and genetics, and the implications of gene patents for research and innovation in the field. Takeaways:
Ellen T. Matloff, MS, CGC is a certified genetic counselor and the CEO of My Gene Counsel, a digital health company that provides scalable, updating genetic counseling solutions for health systems, research studies, pharma and data partners. Wondering how to keep all of your past patients with + or VUS findings up to date? mGC is your answer. Matloff founded the Yale Cancer Genetic Counseling program, served as its director and a faculty member at Yale School of Medicine for 18 years, and was an individual plaintiff in the 2013 SCOTUS BRCA gene patent case. She serves as the Forbes.com contributor on genetic counseling, genetic testing, and digital health. Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals. Here are more resources related to today’s topic:
*Update- Sam Raha will be the new CEO of Myriad Genetics starting in April 2025. Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health. The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. | |||
| 28 Jan 2025 | How Accessible is Genetic Testing? | 00:41:04 | |
Skip to 03:19 min for episode start if you want to bypass intro. In this episode of All Access DNA, host Kate Wilson interviews Deanna Darnes about the intricacies of genetic counseling and testing. We discuss Deanna's journey into the field, the various reasons individuals seek genetic testing, the challenges faced in accessing these tests, and the complexities surrounding insurance coverage. The conversation also highlights the differences between direct-to-consumer testing and tests ordered through healthcare providers, emphasizing the importance of understanding the logistics and implications of genetic testing. In this conversation, Deanna Darnes discusses the complexities and limitations of genetic testing, emphasizing that not all tests are created equal and that they cannot provide a complete picture of an individual's genetic health. She highlights the importance of understanding test results, navigating the healthcare system, and advocating for oneself in seeking genetic information. The conversation also touches on the need for better education and awareness about genetic testing, both for patients and healthcare providers, to improve access and understanding of genetic health.
On This Episode We Discuss:
Deanna R. Darnes, MS, LCGC, is a highly accomplished genetic counselor and clinical trial specialist, bringing over a decade of experience to roles that combine clinical excellence and a commitment to advancing genomic equity. She currently serves as a clinical trial specialist at the Scripps Research Translational Institute, where she coordinates polygenic risk score studies and provides genetic counseling, excelling in translating complex genetic research for study participants and collaborators. Previously, as the Director of Genetic Counseling Services at the Fetal Care Center in Dallas, Deanna managed genetic testing for multiple clinics, implemented advanced screening practices, and founded a unique Clinical Observation Program for prospective genetic counselors. She also held roles at Obstetrix Medical Group, providing prenatal counseling and mentoring future genetic counselors.
A thought leader in her field, Deanna has moderated discussions on genetic counseling's evolution and spoken widely on genomic equity, presenting at national forums and webinars. Her research has been published in prestigious journals, addressing topics such as reproductive healthcare disparities and polygenic risk score utilization. As an advocate for diversity in genetics, she participates in key advisory boards and task forces, leveraging her expertise to foster inclusive genetic research and care.
Please subscribe to this podcast on Apple Podcasts, Spotify, or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com
Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals.
Here are more resources related to today’s topic, access and genetic testing.
Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com
Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health.
The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. | |||
| 14 Jan 2025 | What is a genetic counselor? | 00:42:09 | |
In this conversation, Holly, a genetic counselor, discusses the multifaceted role of genetic counselors, their training, and the importance of genetic counseling in healthcare. She explains the process of genetic counseling, the significance of family history, and the nuances of genetic testing. Holly also addresses the challenges and rewards of being a genetic counselor, emphasizing the emotional aspects of the job and the importance of patient advocacy. The conversation concludes with practical advice on how to find a genetic counselor and the significance of seeking help for genetic concerns.
On This Episode We Discuss:
Holly Zimmerman (she/her) is the inaugural director of the Genetic Counseling Program at the University of Nebraska Medical Center (UNMC) housed in the College of Allied Health Professions (CAHP) and in partnership with the Munroe-Meyer Institute. She holds the rank of associate professor within her college and serves on several college-level committees including the Diversity, Equity, Inclusion, and Belonging steering committee and the Admissions Committee. She served a 3-year term as a faculty senator. Holly serves on the board for the Association for Genetic Counseling Program Directors. She is an active member of the National Society of Genetic Counselors where she has served on numerous committees. Holly received her Bachelor of Science degree from the University of Southern Mississippi and her Master of Science in genetic counseling from the University of South Carolina. Prior to her current role, she worked clinically as a pediatric genetic counselor in Mississippi for over a decade. At the state's only academic medical center, Holly became involved with medical school education. She eventually earned a faculty position within the School of Medicine as a result of her work with medical students, pediatric residents, and maternal fetal medicine fellows. Holly was born and raised in Mississippi and now lives in Nebraska. Her parents provided opportunities early in life that fostered a love of people, their stories, and their experiences. She believes life is richer when connecting with others. She truly enjoys meeting new people and building relationships. https://www.linkedin.com/in/hollyzimmerman-gceducation/
Please subscribe to this podcast on Apple Podcasts, Spotify, or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com
Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals.
Here are more resources related to today’s topic, genetic counselors.
Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com
Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health.
The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. | |||
| 18 Feb 2025 | How does family history shed light on sudden cardiac death? | 00:46:47 | |
In this conversation, Dr. Susan Weiss Liebman discusses her memoir, 'The Dressmaker's Mirror,' which intertwines her personal journey with a genetic search for a mutation linked to her niece's sudden death. She emphasizes the importance of genetic testing, the cultural heritage of her Jewish family, and the challenges faced in communicating genetic information to family members. We delve into the importance of genetic testing, particularly in relation to cardiomyopathy and other heart conditions. Dr. Liebman emphasizes the need for education among healthcare providers and the role of genetic counseling in improving patient outcomes. Key Takeaways:
Dr. Liebman is a trailblazing molecular geneticist who uses yeast as a model organism to study prions and human protein misfolding diseases such as ALS and Alzheimer’s. Her research also extends to the prion form of the cancer gene p53. With over 100 publications in leading journals, including Nature, Science, and Cell, and more than $13 million in research funding, her contributions to the field are substantial. Susan began her scientific journey as one of MIT’s early female undergraduates (B.S. 1968) and went on to earn advanced degrees from Harvard (M.S. 1969) and the University of Rochester (Ph.D. 1974) medical schools. In addition to her research, she taught genetics to undergraduate and graduate students for more than 35 years. In the wake of her 36-year-old pregnant niece’s sudden collapse and death, Susan embarked on a frantic search for answers. The hunt culminated in the discovery of a previously unknown heart disease gene and an Ashkenazi Jewish mutation within it. Against this backdrop, Liebman's The Dressmaker's Mirror: Sudden death, genetics, and a Jewish family's secret, intertwines heartfelt stories of generations of love, loss, and resilience, with insights into genetics and the ongoing genetic revolution. By touching hearts and minds, the book offers a compelling call to action, guiding readers of all ethnicities how to use the frequently overlooked tool of genetic testing to safeguard their families’ health and save lives. Find Dr. Liebman’s book HERE and learn more about the book by checking out the book trailer and visiting www.SusanWLiebman.com Please rate and subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals. Here are more resources related to today’s topic, dilated cardiomyopathy.
The American College of Medical Genetics and Genomics (ACMG) SF v3.2 list for reporting of secondary findnigs in clinical exome and genome sequencing: Any inquiries on this podcast can be sent to AllAccessDNA@gmail.com Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health. The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. | |||
| 25 Mar 2025 | Colon cancer: What is Lynch syndrome? | 00:41:42 | |
In this episode of All Access DNA, Dave Dubin discusses his foundation, Alive and Kick’n, which he started after being diagnosed with Lynch syndrome. He explains the importance of awareness and advocacy for Lynch syndrome, a hereditary condition that increases the risk of colon and other cancers. The discussion covers the differences between sporadic colon cancer and hereditary forms, the significance of genetic testing, and the personal journey of dealing with cancer at a young age. Dave emphasizes the need for proactive screening and the role of advocacy in improving awareness and support for those affected by Lynch syndrome. Dave shares his journey with Lynch syndrome, discussing the implications of genetic testing for himself and his family. Key Takeaways:
Dave Dubin is the co-founder of AliveandKick’n Lynch Syndrome Foundation. You can follow @Aliveandkickndd on Instagram and Bluesky. The views, opinions, and experiences expressed in this interview are Dave’s and not on behalf of his employer. Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals.
Here are more resources related to today’s topic,.
Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health. The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. | |||
| 04 Mar 2025 | What is prenatal genetic testing? | 00:53:31 | |
In this episode of All Access DNA, we talk to Samantha Stover, a reproductive genetic counselor, about prenatal diagnostic testing. We discuss Sam’s journey into genetic counseling, and the differences between screening and diagnostic testing methods such as chorionic villus sampling (CVS) and amniocentesis. The conversation also touches on the conditions that can be detected through these tests and the benefits, risks, and limitations of genetic testing. Sam emphasizes the importance of informed consent, patient autonomy, and the emotional challenges faced by patients. She discusses the variability in insurance coverage and the necessity of understanding each patient's unique situation. Key Takeaways
Samantha Stover is a Reproductive Genetic Counselor in the Division of Maternal Fetal Medicine and Assistant in Obstetrics and Gynecology at Vanderbilt University Medical Center. She has a Bachelor’s of Science in Zoology from North Carolina State University and a Master’s of Science in Genetic Counseling from The University of Alabama at Birmingham School of Health Professions. She received her board certification from the American Board of Genetic Counseling in 2014. Sam has over a decade's experience providing counseling for patients across the reproductive genetics arc, and strongly believes that reproductive autonomy is a core value of the field. As a female genetic counselor with narcolepsy and cataplexy, she lives the intersection of disability rights, genetics, and reproductive autonomy. Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals. Here are more resources related to today’s topic:
Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health. The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. | |||
| 28 Mar 2025 | Should I delete my 23andMe data? | 00:38:26 | |
In today’s episode, we explore the complexities of genetic data privacy, particularly in light of 23andMe's recent bankruptcy filing. Anya Prince discusses the implications for customer data, the legal protections in place, and the unique risks associated with genetic information. The discussion also covers the challenges of data de-identification, customer rights regarding data deletion, and the potential for data breaches. The conversation concludes with reflections on the global landscape of genetic data privacy and the importance of understanding personal values in relation to data sharing. Key Takeaways:
Anya Prince, Professor of Law, Joseph F. Rosenfield Fellow in Law Professor Prince’s teaching and research interests explore health and genetic privacy, with a particular focus on genetic discrimination, the health privacy implications of big data, and the ethical, legal, and social implications of genomic testing. Her research particularly explores the intersections of social and biological data by interrogating the ethical and legal implications of how genetic data can be used to predict social traits and behaviors and, conversely, how social data can be used to predict medical information, including reproductive information. Her interdisciplinary work has been published in legal, bioethics, and medical journals, including the Boston College Law Review, North Carolina Law Review, Iowa Law Review, JAMA, the American Journal of Bioethics, Journal of Law, Medicine, and Ethics, and Genetics in Medicine. In 2022, she was awarded a four-year R01 grant from the National Human Genome Research Institute (NHGRI) at the National Institutes of Health (NIH) to study the ethical, legal, and social implications of sociogenomic polygenic scores. In 2023, she was awarded a Bridging Bioethics, Research & Policymaking grant from the Greenwall Foundation to develop resources regarding state-level genetic privacy legislation. In addition to these grants, Professor Prince is an investigator, consultant, or advisory board member on multiple other NIH-funded projects. She had previously been awarded a Pathway to Independence Award (K99/R00) from NHGRI to examine the use of genetic information by life, long-term care, and disability insurers. Professor Prince is a former Visiting Assistant Professor of Law at Indiana University’s Robert H. McKinney School of Law, where she taught Employment Law and Genetics and the Law. Before joining the legal academy, she served as a Post-doctoral Research Fellow at the UNC Center for Genomics and Society (CGS) in the Department of Social Medicine at UNC-Chapel Hill School of Medicine. Professor Prince has also worked as a Skadden Fellow and Staff Attorney at the Cancer Legal Resource Center in Los Angeles, California. You can follow her @anyaprince.bsky.social
Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com
Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals.
Here are more resources related to today’s topic:
Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com
Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health.
The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. | |||
| 08 Apr 2025 | Are eye color and vision hereditary? | 00:36:08 | |
In this conversation, Naomi Wagner (she/her) discusses the intersection of ophthalmology and genetics, focusing on how genes influence eye development and diseases. She explains the complexity of inherited eye conditions, particularly retinitis pigmentosa, and the ongoing research in ocular genetics. The discussion also explores the inheritance of eye color and the importance of understanding vision impairment in society. Takeaways:
Naomi Wagner is a licensed, board-certified genetic counselor specialized in ophthalmology and rare disease. She currently works as a clinical and research genetic counselor at UC San Diego Health, where she sees patients at both the Shiley Eye Institute and the Center for Bleeding and Clotting Disorders. Naomi is also owner and founder of Wagner Genomics, LLC, through which she does consulting work related to gene-based therapies and clinical trials. Naomi is an active member of several ClinGen groups, including the Retina Gene Curation Expert Panel and the ABCA4, RHO, and Maculopathy Variant Curation Expert Panels. She co-hosts the podcast DNA Dialogues, the official podcast of the Journal of Genetic Counseling. Naomi received her Master of Science from Boston University and her Bachelor of Arts from Pomona College. You can find her on socials under the handle @Naomi_CGC. Please subscribe to this podcast on Apple Podcasts, Spotify, or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals. Here are more resources related to today’s topic:
Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health. The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. | |||
| 15 Apr 2025 | Is Parkinson's Disease genetic? | 00:38:06 | |
In this conversation, Priscila discusses Parkinson's disease, its genetic and environmental factors, and the role of genetic counseling. She highlights the PD Generation study, which aims to increase awareness and understanding of Parkinson's disease, particularly in diverse communities. Priscila emphasizes the need for inclusive research and the role of language access in genetic counseling, sharing her personal motivations for advocating for better access to care and information for all individuals affected by Parkinson's disease. Key Takeaways:
Priscila D. Hodges joined Indiana University School of Medicine in May 2020. She earned her master’s degree in Genetic Counseling from Northwestern University in 2015 and has nearly a decade of experience in bilingual prenatal genetic counseling within multicultural settings. Currently, Hodges offers bilingual genetic counseling to participants in Parkinson’s disease research, ensuring culturally sensitive care. As a passionate advocate for outreach in the Hispanic/Latine community, she plays a vital role in expanding access to genetic services and increasing research participation, striving to bridge healthcare gaps and enhance representation for underserved populations within the Parkinson’s community. Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals. Here are more resources related to today’s topic:
Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health. The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. | |||