All Access DNA

Transgender and gender diverse cancer care, privacy, community safety. On this episode of All Access DNA, we talk to Dr. Mittendorf about hereditary cancer considerations for people who are transgender and gender diverse. We discuss management guidelines, cancer risks and how knowing hereditary cancer risk may inform medical decisions. The conversation also delves into the significant concerns surrounding the privacy of medical data for transgender individuals. It highlights the fear of being identified as trans in medical records and the potential repercussions of such identification, especially in light of recent legal actions involving healthcare providers.    On This Episode We Discuss: The ways gender affirming care can be impacted by hereditary cancer risk. The effect of gender dysphoria in making medical decisions. Hormone therapy (HRT) and cancer risk Privacy concerns are heightened for the transgender community. Recent instances have raised alarms about data security in healthcare. Community safety is a significant concern related to medical data. There is a need for better protections for sensitive health information.   Dr. Mittendorf is an interdisciplinary scientist whose current research focuses on translational genomics and cancer care delivery, especially as it impacts populations with reduced access to care. They have extensive experience in genomic evidence synthesis, data modeling, web application development, community-driven research design, implementation science, and genomic applications in care delivery. They have cross-disciplinary training that covers epidemiology, qualitative research, bioethics, and informatics. Their PhD in biochemistry, with a focus on molecular biophysics, gives them a unique foundation to understand the molecular mechanisms at play in the setting of clinical genomics.   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   Here are more resources related to today’s topic: Dr. Mittendorf’s website that includes links to research and resources CHESTcare website- CHESTcare stands for Cancer & Hereditary Risk Education & Support for Transgender & Nonbinary Individuals. CHESTcare is a resource for people who have had or are planning “top” surgery (gender-affirming mastectomy) or are taking or planning to take testosterone. Our goal is to empower you to make informed decisions about your health and cancer risk. YouTube video on Screening, prevention and gender affirming care for transgender people with mutations Hereditary cancer care for transgender and nonbinary people from FORCE Episode 6- How accessible is genetic testing? With Deanna Darnes Episode 19- Is cancer genetic? With Barry Tong Episode 26- Does genetics influence sex and gender? With Kim Zayhowski   Any inquiries on the podcast can be sent to [email protected]   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. 

Patient zero, memoir, understanding. In this conversation, Steven Crane shares his personal journey living with spina bifida, discussing the challenges he faced from birth through adulthood. He reflects on the support from his family, the medical treatments he underwent, and the impact of his condition on his life. Steven emphasizes the importance of advocacy, understanding, and resilience, and how he found purpose through writing about his experiences. He also addresses the complexities of navigating multiple health conditions and the role of healthcare providers in supporting patients.   Key Takeaways: Spina bifida is a multifactorial condition with varying degrees of impact. Advocacy for oneself is essential in navigating healthcare. Writing can be a therapeutic outlet for personal experiences. Being a patient zero can be both a burden and a responsibility. Empathy and understanding from healthcare providers can significantly affect patient outcomes. There are often hidden blessings in challenging circumstances. Community and shared experiences can foster healing and connection.   Steven Crane is the author of the memoir "I Can Appreciate That", the novel "Staring at the Ceiling", numerous essays, and more than a million words of advertising copy. A graduate of the University of South Carolina, Steven lives in Marietta, GA, with his wife Carie. Their two sons are navigating college at University of GA and GA Southern. More at: www.brainsofsteel.com. Facebook.com/ICATStory Instagram: @icanappreciatethat   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   Here are more resources related to today’s topic: Steven’s website Purchase “I Can Appreciate That” Information on Spina Bifida from Mayo Clinic Spina Bifida Association   Any inquiries on the podcast can be sent to [email protected] 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. Our Social Media Lead is Casey Lepley.

Narrative medicine, story telling, BRCA and breast cancer. In this conversation, Sarah shares their personal journey with being a BRCA1 carrier and experiences with breast cancer. She discusses the emotional weight of genetic risk, the complexities of identity as a previvor, and the importance of narrative in understanding and coping with illness. Sarah also reflects on their professional background in medical anthropology and genetic counseling, emphasizing the need for patient-centered care and the power of storytelling in healthcare. The discussion touches on themes of grief, hope, and the ongoing nature of living with a genetic condition, culminating in Sarah's insights on how poetry and narrative can help articulate the complexities of these experiences.   Key Takeaways: Poetry allows for flexibility in expressing complex emotions. Language can create a sense of community but also exclusion. Grief is a central part of living with a genetic condition. Precision medicine must consider the holistic care of patients. Sarah Roth (@othersarah) is a writer, educator, and genetic counselor based in Baltimore. Her literary work appears in Columbia Journal, Denver Quarterly, Notre Dame Review, and elsewhere, and she ​is an assistant poetry editor at Asymptote Journal and editor in chief of Tendon Magazine. Sarah holds an MFA in Creative Writing from University of Notre Dame and is currently completing her PhD at Johns Hopkins University. 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   Here are more resources related to today’s topic: Sarah’s website  Synapsis: A Health Humanities Journal Tendon Magazine Episode 19- How does genetics impact cancer? With Barry Tong   Any inquiries on the podcast can be sent to [email protected] 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. Our Social Media Lead is Casey Lepley.

Heart disease and lack of genetic testing. In this conversation, Ana Morales discusses the critical signs of genetic heart disease, particularly focusing on early onset conditions and the importance of recognizing red flags such as elevated cholesterol and complications during/after pregnancy. She emphasizes that these health issues should not be ignored and highlights the need for awareness and proactive health management.   Key Takeaways: Having early onset heart disease of any kind is not normal. Early onset is defined as less than age 60. Severely elevated cholesterol, especially if it runs in families, is concerning. Onset of heart disease during or soon after pregnancy is a red flag. Thoracic aortic aneurysm at any age should not be ignored. Over 95% of people who have a genetic heart condition have not had genetic testing. Hereditary cardiac disease is underdiagnosed. Proactive health management can save lives.   Ana Morales is an Associate Professor at the Geisinger Department of Genomic Health, a board-certified genetic counselor, and a Translational Health Sciences Ph.D. candidate. Her dissertation, titled "Development of a Guideline-Based Innovation to Support the Genetic Evaluation of Cardiomyopathy and Arrhythmia: An Exploratory Mixed Methods Study," aims to address existing guideline gaps by developing an implementation plan for an innovation designed to support the genetic evaluation of cardiomyopathy and arrhythmia. Ana's prior work includes evaluating genetic testing utilization, highlighting the underutilization of cardiomyopathy genetic testing. She has also contributed to key literature, including co-authoring the American College of Medical Genetics and Genomics/Heart Failure Society of America guideline on the genetic evaluation for cardiomyopathy and the National Lipid Association guideline on familial hypercholesterolemia (FH).   Currently, Ana serves as the Principal Investigator for the NIH-funded IMPACT-FH study, which investigates implementation science-based strategies to promote cascade genetic testing in primary care. Ana has held professional leadership roles, including membership in the ClinGen Cardiovascular Disease and Ancestry/Diversity Working Groups, as well as serving as the 2019 President of the American Board of Genetic Counseling. She currently chairs the Clinical and Laboratory Standards Institute's Standard 29 group, a position dedicated to fostering effective communication and collaboration with clinicians and test utilization management.   Outside of her professional work, Ana enjoys spending quality time with family and friends, exploring new foods, dancing, appreciating visual art, and diving into diverse non-fiction books.   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   Here are more resources related to today’s topic: Findageneticcounselor.org to search for a genetic counselor near you DCM Foundation Implications of Genetic Testing in Dilated Cardiomyopathy Find a Cardiomyopathy Specialist Genetic Cardiomyopathy Awareness Consortium Global Heart Hub for non-US residents Episode 8- Should I consider genetic testing for dilated cardiomyopathy? With Greg Ruf Episode 9- How does family history shed light on sudden cardiac death? With Dr. Susan Liebman   Any inquiries on the podcast can be sent to [email protected]   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. Our Social Media Lead is Casey Lepley.

Weight management, epigenetics, and childhood obesity. In this conversation, Dr. Evan P Nadler discusses the complexities of childhood obesity, emphasizing that it is a disease influenced by genetics, maternal health, and lifestyle factors. He highlights the importance of understanding the role of epigenetics and the in utero environment in the development of obesity. The discussion also covers the myths surrounding childhood obesity, the impact of genetics versus lifestyle choices, and the potential benefits of genetic testing. Dr. Nadler advocates for a comprehensive approach to treatment, including lifestyle changes and medical interventions, while encouraging parents to seek help and to not feel shame about looking for answers.   Key Takeaways: Obesity is a disease, not a lifestyle choice. Genetics and epigenetics play significant roles in obesity Genetic predisposition can influence lifestyle choices. Genetic testing can help identify risks for obesity. Weight loss challenges may have genetic underpinnings. Food addiction and cravings are influenced by biology. The treatment landscape for obesity is evolving rapidly. Evan P. Nadler MD served as Co-Director of the Children’s National Obesity Programs and Director of the Child and Adolescent Weight Loss Surgery Program at Children’s National Hospital from 2009 until 2023. He was also a tenured Associate Professor of Surgery, and Pediatrics, at The George Washington University School of Medicine & Health Sciences and continues there as an Adjunct Associate Professor. Before moving to Washington DC, he was the Director of Minimally Invasive Pediatric Surgery at the New York University School of Medicine where he participated in US Food and Drug Administration-approved studies using laparoscopic adjustable gastric banding in adolescents with obesity. His current pursuits include pediatric obesity treatment program development as a Founder of ProCare Telehealth, authoring a book on obesity, and educating the public about obesity via his YouTube channel, website, and media appearances. Dr. Nadler is an international leader in the field of child and adolescent obesity, has authored multiple publications and textbook chapters on the topic of pediatric bariatric surgery, and was one of the founding members of the Childhood Obesity Committee of the American Pediatric Surgery Association.    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   Here are more resources related to today’s topic: Dr. Nadler’s YouTube Channel: https://www.youtube.com/@obesityexplained American Academy of Pediatrics Clinical Practice Guideline for the Evaluation and Treatment of Children and Adolescents with Obesity NPR Article about the AAP Guideline and concerns about the guideline Testing for rare genetic causes of obesity: findings and experiences from a pediatric weight management program from Nature Diagnostic yield of genetic testing for non-syndromic early-onset obesity in a multidisciplinary pediatric obesity clinic- abstract from Genetics in Medicine   Any inquiries on the podcast can be sent to [email protected]   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. Our Social Media Lead is Casey Lepley.