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, and the challenges faced by parents of intersex children. The discussion highlights the complexity of genetic definitions and the need for better understanding and support within the healthcare system. It highlights the ongoing legislative challenges that threaten the rights and healthcare access of these communities, while also emphasizing the need for advocacy and allyship.

Key Takeaways:

• Intersex conditions encompass a wide range of biological variations.
• Parents need support in navigating intersex diagnoses.
• Genetic definitions of intersex are complex and varied.
• Healthcare providers must approach intersex care with sensitivity.
• Surgical interventions for intersex individuals are controversial and complex.
• Patient autonomy is crucial in medical decisions regarding gender assignment.
• Legislation is increasingly targeting transgender and intersex communities.
• Inclusive conversations about sex and gender are essential in healthcare.
• Cisgender individuals can use their privilege to advocate for intersex and transgender rights.

Kaitlyn Brown is a certified genetic counselor from New Zealand who is endosex and identifies as a genderqueer femme, assigned female at birth. Currently a laboratory genetic counselor specializing in cell-free DNA prenatal screening, Kaitlyn has been an active advocate for the intersex community/ people with differences of sexual development and assisted in care management as a former pediatric genetic counselor and researcher. They have been involved with passing government initiatives to legislate awareness and understanding of differences of sex development for healthcare professionals and others who care for this community. Given the history of harmful practices performed on intersex and gender diverse people, Kaitlyn uses a trauma-informed lens to educate about sex development and incorporate both sex- and gender- diverse experiences and needs. They can be found on Bluesky as geneticsbtb.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

Here are more resources related to today’s topic, genetic counselors.

• InterACT- Advocates for Intersex Youth
• Sambia culture of Papua New Guinea and “turnim-man”
• Trauma Informed Care
• Intersex Justice Project
• Strategy Lab for Intersex Movements (SLIM)
• InterConnect Support
• Tested podcast about sex testing in elite sports from NPR
• Book, Sex Itself by Sarah S Richardson

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.

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 system, from solving cases to overturning wrongful convictions.

Dr. Henry Erlich has authored over 450 publications and spent decades applying DNA analysis to criminal investigations, missing persons cases, and ancestry research. His lab performed the first DNA case in the US and, in 1988, the first DNA exoneration. Erlich was the Director of the Department of Human Genetics and Vice-President of Discovery Research for Roche Molecular Systems, Inc until 2013. He is currently a Senior Scientist at Benioff Children’s Hospital Oakland Research Institute.

After reading his book Genetic Reconstruction of the Past, I had countless questions about how PCR reshaped the justice system, its impact on exonerations, and the ethical implications of forensic DNA databases.

Trigger Warning: This episode contains discussions of murder and sexual assault, which may not be suitable for young listeners.

Key Takeaways:

• The development of PCR technology and its revolutionary impact on forensic genetics

• How PCR outperformed older methods like RFLP in criminal case investigations

• Pennsylvania vs. Pestinikas (1986), the first criminal case using DNA analysis

• Key forensic DNA terms explained: inclusion, match, exclusion, and random match probability

• The role of DNA evidence in exonerations and wrongful convictions

• How forensic labs analyze DNA from multiple individuals at crime scenes

• The establishment of the FBI’s National DNA Index System (NDIS) and who is included

• The ethical concerns surrounding partial DNA matches and familial searching

• How public DNA databases like GEDmatch helped identify the Golden State Killer

• Dr. Erlich’s insights into the O.J. Simpson case and its impact on public perception of forensic DNA

Resources and Links:

• Read Genetic Reconstruction of the Past by Dr. Henry Erlich
• Explore the National DNA Index System (NDIS) and CODIS
• The Innocence Project: Fighting wrongful convictions with DNA evidence
• GEDmatch and its role in forensic investigations

Please subscribe to All Access DNA and DNA Today on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes. 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.

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.

DNA Today is hosted and produced by Kira Dineen, MS, LCGC, CG(ASCP)CM . Our Video Lead is Amanda Andreoli. Our Social Media Lead is Kajal Patel. Our Outreach Intern is Liv Davidson. And our logo Graphic Designer is Ashlyn Enokian, MS, CGC. The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ.

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 together, and why his wife is the true hero of his story. Matt tells us how music shaped his life and how he continues to connect with it after hearing loss, the emotional impact of NF2, and the one song that defines his life today.

Matt Hay (IU MS’99, MBA’09, DrPH’26) has a long journey toward deafness and even longer journey toward learning to “hear” again with an experimental brainstem implant. Now an global in-demand keynote speaker, he first publicly shared his story on a National Public Radio (NPR) podcast titled Soundtrack of Silence. The intimate, funny and authentic peek at what it’s like to start a career, fall in love and build a life while battling a rare disease inspired actor Channing Tatum and Paramount Pictures to option the motion picture rights to Matt’s life story. Matt’s memoir Soundtrack of Silence was released in 2024 by St. Martin’s Press, an imprint of Macmillan. Publishers Weekly said Hay’s “moving memoir makes magic out of facing the music” and it immediately earned a spot as an Amazon Best Seller within the Disability Category.

When Matt isn’t adding tracks to the soundtrack of his life, he passionately supports the hearing loss community as a member of the Columbia University Genetic Counseling Advisory Board and previously as a consultant to the St. Joseph Institute for the Deaf. He proudly served as a Congressional lobbyist for neurofibromatosis (NF) research funding, the genetic disorder that caused his hearing loss, and has raised money for NF research by doing endurance events, including an Ironman Triathlon and the Boston Marathon. He didn’t win either one.

Matt currently serves the rare disease community as the US Director of Advocacy for a global biopharmaceutical company and is a doctoral candidate at the Indiana University School of Public Health with a focus on global health leadership. He lives in Westfield, Indiana, with his wife (whom he’s quick to point out is the hero of his story) and three children.

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:

• Findageneticcounselor.org to search for a genetic counselor near you
• But Matt’s book on Bookshop.org HERE
• Info on NF2 from National Organization for Rare Disorders
• American Society for Reproductive Medicine

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.

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, and the need for accessible genetic services in underserved communities.

Key Takeaways:

• Public health aspects are crucial in understanding cancer.
• Misconceptions about cancer origins can hinder patient understanding.
• Personalized risk assessments are essential for effective cancer prevention.
• Polygenic risk scores are emerging tools for assessing cancer risk.
• Access to genetic services is crucial for underserved populations.

Barry Tong is a currently a genetic counselor supervisor at the UCSF Health Cancer Genetics and Prevention Program. Previously, Barry held several medical affairs and sales roles at Myriad Genetic Laboratories, and is a graduate of the University of Michigan Genetic Counseling and Public Health dual degree program. He is passionate about equitable access to genetics services, genetic counselor education and mentoring, and ensuring diverse and equitable entry into the genetic counseling profession.

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 support our independent podcast 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 is a polygenic risk score? From National Human Genome Research Institute
• Wisdom study with the goal to change the way breast cancer is detected and risk is reduced
• Find A Genetic Counselor from NSGC.org
• Multifactorial and Complex Disorders
• Episode 14- Colon Cancer: What is Lynch syndrome?
• Episode 12- Who has surgery to prevent colon cancer?
• Episode 7- Are leukemia and lymphoma hereditary?

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.

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 newborn screening practices. Kevin shares personal stories and experiences that highlight the need for advocacy and community involvement in maintaining and improving the newborn screening system.

Key Takeaways:

• PKU is an inborn error of metabolism that requires lifelong dietary therapy.
• Newborn screening is crucial for early detection of PKU to prevent brain damage.
• Newborn screening includes a simple blood test to evaluate for various conditions.
• The recommended uniform screening panel (RUSP) guides which diseases are screened.
• Recent policy changes threaten the inclusion of new conditions in newborn screening. The newborn screening system is crucial for public health.

Kevin Alexander is an adult living with PKU. He's also a filmmaker, and since 2012 has been traveling the world as a PKU, newborn screening, and rare disease advocate. He's a volunteer for the National PKU Alliance, an advocate with the Louisiana Metabolic Disorders Coalition, and a member of the International Society of Neonatal Screening.

You can find him online at:

IG: @kevinalexander_pku

FB: www.facebook.com/pkujournal

LinkedIn: www.linkedin.com/in/kevinalexander/

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 support our independent podcast 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:

• My PKU Life | A Short Film about My PKU Experience
• Regaining Hope: My Journey to Rare Disease Advocacy | A Podcast Episode about the intersection of life, rare disease, and mental health
• Newborn Screening Is A Human Right | A blog article with Kevin’s thoughts on the termination of the Advisory Committee on Heritable Disorders in Newborns and Children
• The National PKU Alliance
• Baby’s First Test- information on newborn screening
• National Organization for Rare Disorders
• Original landing page for the Advisory Committee on Heritable Disorders in Newborns and Children
• The Recommended Uniform Screening Panel or RUSP
• Hunters Hope- non-profit for Krabbe and other leukodystrophies, as well as newborn screening starting by Jim and Jill Kelly
• For Katy: A Film About Newborn Screening
• For more information on rare disease, listen to episode 10- When is rare disease not so rare?

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.

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:

• Parkinson's disease is a neurodegenerative disorder affecting movement.
• The causes of Parkinson's are multifactorial, involving genetics and environment.
• Genetic testing can identify variants that increase the risk of Parkinson's.
• Everyone has a background risk for developing Parkinson's disease.
• Diversity in research helps understand genetic differences across populations.
• Language access in genetic counseling improves patient understanding and care.
• Community outreach is essential for increasing participation in research.

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:

• Findageneticcounselor.org
• Breaking Barriers: Advancing Genetic Counseling for Parkinson’s in Latin America by Priscila D. Hodges
• Parkinson's Foundation
• The Michael J. Fox Foundation for Parkinson’s Research
• World Parkinson Coalition
• World Parkinson Congress 2026
• Interview with Dr. Ignacio Mata about the Latin American Research consortium on the Genetics of Parkinson’s Disease (LARGE-PD)
• Information on PD GENEration research study

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.

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:

• Ophthalmologic or ocular genetics explores how genes affect eye health.
• Inherited conditions can be complex and multifactorial.
• Blindness and vision loss vary greatly among individuals.
• Eye color inheritance is influenced by multiple genes.
• Gene therapy shows promise for treating inherited eye conditions.

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:

• Findageneticcounselor.org to search for a genetic counselor near you
• Hereditary Ocular Disease from Research to Prevent Blindness
• Retinitis Pigmentosa from American Academy of Ophthalmology
• Parts of the Eye and How We See

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.