All Access DNA

In this conversation, we delve into the complexities surrounding intersex and transgender identities, focusing on medical ethics and the importance of patient autonomy. Our guest, Kaitlyn Brown, discusses their advocacy for the intersex community, emphasizing the importance of trauma-informed care in healthcare settings. We talk about the differences between intersex and transgender identities, the prevalence of intersex conditions...

We are featuring an episode from another podcast on Gene Pool Media, DNA Today. True crime dominates the podcasting world, but what about the genetic aspects behind these cases? In this episode of DNA Today, we dive into the pivotal role of DNA in forensic science with Dr. Henry Erlich, a pioneer in DNA analysis and a key figure in developing polymerase chain reaction (PCR) technology. His work has transformed the criminal justice ...

In this episode, Kate talks to Matt Hay about is book, “Soundtrack of Silence”. Matt opens up about his experience with neurofibromatosis type 2 (NF2), a genetic condition that led to profound hearing loss- and ultimately, the creation of his memoir, “Soundtrack of Silence: Love, Loss, and a Playlist for Life”. We explore his and his wife’s journey with IVF and preimplantation genetic testing, how they faced life-changing diagnoses...

In this conversation, Barry Tong discusses the complexities of cancer genetics, emphasizing the intersection of genetic factors and public health. He explains how cancer arises from both genetic predispositions and environmental influences, and the importance of personalized risk assessments. The discussion also highlights the role of family history in cancer risk, and the challenges faced by patients navigating a cancer diagnosis,...

In this conversation, Kevin Alexander shares his personal journey living with PKU (phenylketonuria) and his passion for newborn screening advocacy. He discusses the importance of dietary therapy, the challenges of navigating insurance coverage for treatment, and the critical role of newborn screening in early detection. We discuss the recent policy changes enacted without warning by the current administration and how that impacts n...

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 ad...

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...

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...

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 co...

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 pe...

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 Co...

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 t...

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 limitat...

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 condition...

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, part...

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 t...

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 sy...

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 d...

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 thro...