All Access DNA

What is Wolfram syndrome? with It Happened to Me

It is a podcast crossover with It Happened to Me: A Rare Disease & Medical Challenges Podcast! It Happened to Me is also part of the Gene Pool Media Network
In this podcast, patient advocates Cathy Gildenhorn and Beth Glassman share their medical challenges living with rare diseases and are joined by fellow advocates and experts on the show.
 
For this episode, Beth Glassman interviews her co-host Cathy Gildenhorn about her rare disease, Wolfram Syndrome. 
Co-host Cathy Zacks Gildenhorn has devoted much of her life to improving the lives of others and connecting women to Jewish life and each other. She has served on several local, national and international boards. Cathy also served as presidential appointee to the United States Holocaust Memorial Council and worked on the opening of the museum. Currently, Cathy serves as editor in chief and designated spokesperson for the book, Redefining Moments: End of Life Stories for Better Living. Several years ago Cathy was diagnosed with a rare, genetic disease. Since then she has passionately dedicated her life to creating this supportive and inspiring podcast so that all in the medically challenged community know…You are Not Alone. 
 
On This Episode We Discuss:
Defining Wolfram Syndrome
Frequency of Wolfram Syndrome
Cathy’s Diagnostic Odyssey 
Symptoms of Wolfram Syndrome
Current Wolfram Syndrome Treatments
Research for Wolfram Syndrome 
Cathy’s prognosis 
Processing diagnosis
CRISPR potential treatment 
You can find other episodes of It Happened To Me! on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 
It Happened To Me is created and hosted by Cathy Gildenhorn and Beth Glassman. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-producer. Ashlyn Enokian is our graphic designer. 
 
About All Access DNA Podcast
Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com
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
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. 

Why make a movie about BRCA? with Love, Danielle film

Exploring Hereditary Cancer and the Making of "Love, Danielle". In this conversation, Devon Sidell and Amy Byer Shaneman discuss their new film, 'Love, Danielle' which explores the emotional and physical challenges faced by individuals with BRCA gene mutations. They share their personal stories, the impact of preventative surgeries, and the importance of genetic testing. The film aims to raise awareness and provide support for those navigating hereditary cancer risks, while also addressing family dynamics and the emotional weight of such decisions. The discussion highlights the need for better resources and education surrounding genetic testing and cancer prevention.
 
Key Takeaways:
The film, Love, Danielle, portrays the emotional and physical challenges of previvors.
Post-surgery realities include ongoing medical check-ups and hormone changes
The film aims to entertain while educating about BRCA mutations.
Family dynamics play an important role in the decision-making process.
Genetic testing can be life-changing for families at risk.
Healthcare providers need to communicate sensitively about genetic results.
Love, Danielle is a pioneering narrative on hereditary cancer.
 
ABOUT DEVIN SIDELL (Instagram: @devin.sidell)
In 2017, after receiving a positive BRCA 1 gene mutation diagnosis, actress and activist Devin Sidell decided to undergo a preventative double mastectomy and preventative hysterectomy/oophorectomy earning her the label of “previvor,” someone who has a predisposition to developing cancer but has not yet been diagnosed. Sidell, is BRCA-1 positive and underwent a preventative oophorectomy/hysterectomy in November 2016 while her older sister was undergoing chemotherapy for Triple-Negative, Stage 2B breast cancer. Sidell’s mother survived Stage 3C ovarian cancer in 1994 as well as breast cancer in 2012. Her mother’s sister passed away from ovarian cancer in 1996. In December 2017, Sidell opted to undergo a preventative double-mastectomy. Since her diagnosis, Devin has become a spokesperson for women taking fate into their own hands and encouraging them to partake in genetic testing. She is also a co-writer, star and executive producer of the first scripted feature film about the decisions an individual who carries the BRCA gene mutation must face.
 
ABOUT AMY BYER SHAINMAN (Instagram: @brcaresponder)
Amy Byer Shainman, also known as BRCA Responder, is an advocate, author, and producer providing support and education surrounding BRCA and other hereditary cancer syndromes. She is the executive producer of the award-winning documentary Pink & Blue: Colors of Hereditary Cancer and the new feature film about the decisions one has to face when diagnosis with BRCA gene mutation, Love Danielle. Shainman is a BRCA1 gene mutation carrier and "previvor. In 2010, she had two prophylactic surgeries to reduce her cancer risk drastically: a nipple-sparing, skin-sparing mastectomy with reconstruction and oophorectomy with a hysterectomy. Cure Magazine, The Jewish Journal, and The Palm Beach Post have featured Shainman's story. She has also appeared on numerous live and taped television and radio segments nationwide. As a digital ambassador for the National Society of Genetic Counselors gene pool, Shainman is considered one of fifteen influencers who have unique perspectives and knowledge in the fields of genetics and genetic counseling. She is an administrator for the largest female-only BRCA support group on social media. Shainman has published articles in The American Journal of Managed Care, Jupiter Magazine, and Oncology Nursing News. Shainman's medical memoir Resurrection Lily: The BRCA Gene, Hereditary Cancer & Lifesaving Whispers from the Grandmother I Never Knew has won over a dozen literary awards and was the December 2020 book club selection of The National Library of Medicine
ABOUT LOVE, DANIELLE (Instagram: @lovedanielle.film)
When Danielle, a happily married thirty-something, tests positive for a BRCA1 gene mutation, she learns that this puts her at a very high risk of developing breast and ovarian cancer. Her older sister Amy is already undergoing chemotherapy for a breast cancer diagnosis. Danielle now contemplates preemptively removing her "ticking time bomb" breasts and reproductive organs before cancer gets her, too. Her decision-making process involves flashbacks of her childhood with absent parents, bizarre anesthesia-induced dreams, and toxic confrontations with her recovering alcoholic mother and self-absorbed 70's TV Western star father. Ultimately, Danielle must figure out how to prioritize her health and well-being by putting herself first.
 
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:
Love, Danielle website and trailer
Devin Sidell’s website
Resurrection Lily by Amy Byer Shainman
Facing Our Risk of Cancer Empowered- a nonprofit for individuals facing hereditary cancer
The Lynne Cohen Foundation for women facing increased risk of breast and ovarian cancers
His Breast Cancer Awareness- male breast cancer support organization
Bright Pink
Male Awareness Foundation
Findageneticcounselor.org to search for a genetic counselor near you
 
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. Our Social Media Lead is Casey Lepley.

What is IVF with pre-implantation genetic testing (PGT)?

Considerations in genetic testing and IVF. In this conversation, Natalie Richeimer discusses the intricacies of pre-implantation genetic testing (PGT) as part of in vitro fertilization (IVF). She explains the different types of PGT, its accuracy, limitations, and the ethical considerations surrounding genetic testing. The financial burden of IVF and PGT is also addressed, highlighting the lack of insurance coverage and the high costs involved. Richeimer emphasizes the importance of genetic counseling in navigating these complex decisions and shares her personal experiences with IVF, underscoring the emotional impact on patients. The conversation concludes with a call to action for patients to seek genetic counseling and resources available through organizations like JScreen.
 
Key Takeaways:
PGT is part of the IVF process
PGT is a screening test, not a diagnostic test
The accuracy of PGT results can vary
Genetic counseling is available for patients undergoing IVF
Ethical considerations are complex
Patients often face emotional and financial challenges during IVF and PGT
 
Natalie Richeimer, MS, CGC, is a board certified genetic counselor at jscreen with clinical experience in adult, pediatric, and reproductive genetic counseling. She holds a master's degree in human genetics and genetic counseling from the Keck Graduate Institute. Natalie is a native Torontonian, who lives in Los Angeles with her husband and two boys. She has published research in the Journal of Genetic Counseling on the impact of orthodox Jewish clergy’s role in prenatal genetic counseling. Prior to her work as a genetic counselor, Natalie worked as a high school STEM teacher for 7 years in Los Angeles. She is passionate about reproductive health education and community engagement. Natalie has a special interest in outreach, with the goal of increasing awareness of and access to genetic counseling. Natalie has partnered with local organizations and high schools to provide community education.
 
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. Don’t forget to rate us as that helps more people, like you, find the show!
 
Here are more resources related to today’s topic:
Find a Genetic Counselor
American Society for Reproductive Medicine or ASRM
American College of Obstetricians and Gynecologists (ACOG) Committee Opinion on Pre-implantation Genetic Testing
Episode 20- How does music tell the story of genetic hearing loss? With Matt Hay
Episode 5- Do I need prenatal genetic screening? With Blair Stevens
 
Any questions, episode ideas, guest pitches, or comments can be sent to AllAccessDNA@gmail.com
 
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!.

Podcast Awards & New Season

Hey hey DNA! We are celebrating our first season by being nominated for the Podcast Awards! Please help us win the title as Best Health Podcast.
Just head over to podcastawards.com and click the blue button that says “Signup to Vote Now” and fill out your info. Then a CRUCIAL step is to check off the box that says “Please consider me as one of the listeners that will be randomly selected to vote on the final slate in August”. This means you, our listener, will get to vote in the final round of voting!
Once you fill out this info, you will be taken directly to the nominations page. Scroll down to the “Heath” category and select All Access DNA. Then hit save nominations at the bottom of the page. You will have an email asking you to confirm your email address to try to reduce bot votes. So please confirm and that’s it!
I am so thankful for everyone who has listened and checked out the All Access DNA podcast. We are a very small and independent podcast so it means the world to me that you take the time and vote for us in the People’s Choice podcast awards.
Additionally, we are on a break for July so we can gear up for August with new episodes, new updates, and new experts in genetic medicine. Stay subscribed so you don’t miss the next season.
And take a moment to go to podcastawards.com , fill out your info and select All Access DNA in the Health category. It just takes 30 seconds! And thank you, thank you for listening!

Is autism genetic?

In this conversation, Dr. Chaya Murali discusses the importance of understanding autism, the role of genetic testing, and the impact of misinformation surrounding vaccines and autism. She emphasizes the need for families to seek reliable resources and support while navigating the complexities of neurodivergence. The conversation also highlights the emotional aspects of parenting children with autism and the importance of empathy in medical practice.
 
Key Takeaways:
Many genetic conditions can co-occur with autism, highlighting the need for genetic evaluations.
Autism is partially genetic, but environmental factors also play a role.
Current genetic testing can identify a known genetic cause in about 30% of autism cases.
The rise in autism diagnoses may be due to better awareness and changes in diagnostic criteria.
Boys are diagnosed with autism more frequently than girls, but this may change as awareness grows.
Genetic testing for autism is not predictive or diagnostic.
Misinformation about vaccines continues to circulate despite evidence showing that vaccines do not cause autism
 
Dr. Chaya Murali is a pediatric geneticist and personal essayist in Houston, TX. Her clinical focus includes general genetics and skeletal dysplasias, and her research focus includes quality of life and lived experiences among people with rare disease and their families. She has cultivated a special interest in science communication, particularly around the genetics of autism in particular and human genetics in general. Dr. Murali's personal essays can be found at www.chayanautiyalmurali.com, and she can be found occasionally Instagramming @AkkasHouse
 
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:
“Handing the pen to the patient: Reflective writing for children and families affected by genetic conditions” by Chaya Murali, Susan D Fernbach, Lorraine Potocki
SPARK for Autism Research
Autism Foundation
Autistic Self Advocacy Network (ASAN)
The Color of Autism Foundation
 
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.

Does genetics influence sex and gender?

In this conversation, Kim Zayhowski discusses the distinctions between sex and gender, emphasizing that sex is biological while gender is a social construct. She explores the complexities of chromosomes, the fluidity of gender identity, and the implications of societal norms on individual expression. The discussion also touches on the weaponization of scientific terminology in policy-making, the intersection of transphobia and misogyny, and the importance of recognizing diverse gender identities. Zayhowski advocates for active allyship and resistance against discriminatory policies, highlighting the importance of empathy and understanding in fostering a more inclusive society.
 
Key Takeaways:
Sex and gender are not interchangeable terms.
Biological sex is complex and not binary.
Gender identity is shaped by culture and personal experience.
Cisgender individuals have a gender identity that matches their assigned sex at birth.
Scientific misconceptions can be weaponized in policy-making.
Transphobia is often rooted in misogynistic beliefs.
Healthcare policies must respect bodily autonomy for all individuals.
Inclusive language is essential in healthcare discussions.
 
Kim Zayhowski is a genetic counselor, researcher, and assistant professor at Boston University Chobanian & Avedisian School of Medicine. She earned her Master’s in Human Genetics and Genetic Counseling from Stanford University School of Medicine. Her research focuses on the intersection of LGBTQIA+ care and genetics.
 
Please subscribe to this podcast on Apple Podcasts, Spotify, Amazon Music, 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:
Episode 22 with Kaitlyn Brown- What are sex trait variations and how do we support intersex individuals?
Tested podcast about sex testing in elite sports from NPR
Book, Sex Itself by Sarah S Richardson
Bridging the gap: Time to integrate sex and gender differences into research and clinical practice for improved health outcomes by Roberta Gualtierotti
 
 
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. 
 

How do budget cuts impact genetic medicine?

In this conversation, Eric Green discusses the role of the National Human Genome Research Institute (NHGRI) in leading the Human Genome Project and advancing genomic research. He shares his journey at NHGRI, highlighting the significant progress made in genomic medicine, including the All of Us Research Program, which aims to collect genomic and health data from a diverse population. Dr. Green emphasizes the importance of public sector involvement in data sharing and the challenges faced in genomic research. He also addresses the potential impact of funding cuts on future research initiatives. Dr. Green discusses the importance of public advocacy for genomics research and the need for a more equitable approach to genomic medicine. We  highlight the growing relevance of genomics in healthcare and the necessity for better public understanding and communication of genomic information.
 
Key Takeaways:
The NHGRI was established to lead the Human Genome Project.
Genomic information can improve disease diagnosis and treatment.
The cost of sequencing a human genome has drastically decreased.
The All of Us Research Program aims to collect genomic and health data from a million participants.
Public sector involvement is crucial for data sharing in genomics.
Funding cuts to NIH could severely impact genomic research initiatives.
There is a risk of losing a generation of young scientists due to current policies.
Healthcare professionals need to be equipped to discuss genomics with patients.
The future of genomic medicine depends on continued research and public engagement.
 
Dr. Eric Green is a genomics researcher, Human Genome Project participant, and former Director of the National Human Genome Research Institute (NHGRI) at the U.S. National Institutes of Health (NIH). He was the third NHGRI Director, having been appointed by NIH Director Dr. Francis Collins in 2009. He served as NHGRI Director from 2009 to 2025.
Dr. Green was at NHGRI for over 30 years, during which he was appointed to multiple key leadership positions prior to becoming the NHGRI Director. This included serving as the NHGRI Scientific Director for 7 years, Chief of the NHGRI Genome Technology Branch for 13 years, and Founding Director of the NIH Intramural Sequencing Center for 12 years.
For just over two decades, Dr. Green directed an independent research program that included integral start-to-finish roles in the Human Genome Project, groundbreaking work on mapping, sequencing, and comparing mammalian genomes, and key discoveries about the genes involved in several rare genetic diseases.
Dr. Green earned his M.D. and Ph.D. degrees in 1987 from Washington University in St. Louis; coincidentally, the word “genomics” was coined in that same year. Throughout his career, he has authored and co-authored over 395 scientific publications. Dr. Green has earned multiple honors and awards, including election to the National Academy of Medicine in 2023.
Following his greater than 30 years of public service as a federal employee at NHGRI and NIH, Dr. Green is now using his extensive experience in leading government-funded research programs to foster the expansion of genomics in academia, healthcare, and everyday life.
 
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:
National Human Genome Research Institute (NHGRI)
National Institutes of Health (NIH)
All of Us Research Program
The Human Genome Project by Francis Collins and Leslie Fink
Science impacts from recent limitation efforts from current administration:
Do you remember the Human Genome Project? I’m not sure the Trump administration wants you to
Trump’s proposed budget would mean ‘disastrous’ cuts to science
Scientific Research is Getting Cut—and That Should Scare All Americans
Cuts to science agencies undermine hope for American health and economies from the American Society for Biochemistry and Molecular Biology
PBS News Hour- Scientists sound the alarm on Trump administration’s dismantling of research funding
Ways to make your voice heard on saving science and genomics
Contact your representative
Share your support for science on social media, engage in conversations with friends and family, and participate in local town halls
Advocate for individuals who support science and evidence-based decision-making in federal agencies
The Bethesda Declaration:  A Call for NIH and HHS Leadership to Deliver on Promises of Academic Freedom and Scientific Excellence
 
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. 

Why would someone have a third trimester abortion?

In this conversation, Dr. Shelley Sella discusses her book “Beyond Limits: Stories of Third-Trimester Abortion Care” and her experiences in providing third trimester abortion care. She emphasizes the importance of understanding the circumstances that lead individuals to seek such care, the emotional and psychological aspects involved, and the need for compassionate support. The discussion also touches on the legal implications surrounding abortion, the safety of the procedures, and the necessity for empathy and understanding in the healthcare system.
Key Takeaways:
Third-trimester abortion care is often stigmatized and misunderstood.
The emotional and spiritual aspects of care are integral to the process.
Legal restrictions are increasing, making access to care more difficult.
Support systems are crucial for patients undergoing these procedures.
Abortion is far safer than continuing a pregnancy in many cases due to the high maternal mortality rate in the United States
The stories of patients can help demystify and destigmatize the procedure.
 
Dr. Shelley Sella is a retired Board Certified Ob-Gyn and the first woman to openly provide third trimester abortion care in the United States. For 20 years Dr. Shelley Sella – an OB-GYN and the first woman to openly provide third-trimester abortion care in the United States – saw patients whose diverse backgrounds and circumstances led them to the same difficult decision: to end their pregnancies. Now, in her beautifully written and compassionate first book BEYOND LIMITS: Stories of Third-Trimester Abortion Care (June 3, 2025; Beacon Press; $27.95), Dr. Sella shares deeply intimate, profoundly human stories of this widely misunderstood experience. Combining candid memoir with expert account, Sella interweaves her patients’ stories with her own personal and professional journey (including her mentorship under Dr. George Tiller) to reveal why she dedicated her life to this work.
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:.
Purchase book at bookstore.org
Remembering Dr. George Tiller
Los Angeles Times piece from 2015 on Dr. Susan Robinson
Information on midwifery from WHO
Overturning of Roe v Wade from NPR
Southwestern Women’s Options
Website to share stories about abortion from the National Abortion Federation
Article on the high maternal mortality rate in US
The Turnaway Study that describes the mental health, physical health, and socioeconomic consequences of receiving an abortion compared to carrying an unwanted pregnancy to term
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. 

Replay: Should I delete my 23andMe data?

This is a replay of our bonus episode that was released on March 28, 2025 and prior to Regeneron Pharmaceuticals purchasing 23andMe. Regeneron entered the asset purchase agreement on May 19, 2025 and states it plans to maintain the consumer genetics business. Regeneron also stated it would prioritize the privacy, security and ethical use of 23andMe's customer data. See more about the announcement here.
In this 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:
23andMe's bankruptcy raises concerns about customer data.
New ownership of 23andMe or its data could change how genetic data is used.
Security breaches pose significant risks to genetic data.
Global laws on data privacy vary significantly.
Understanding personal values is crucial in data sharing decisions.
 
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:
Press Release from 23andMe about Voluntary Chapter 11 Initiation
23andMe Privacy Information
California Attorney General Consumer Alert 23andMe
HIPAA Information from US Department of Health and Human Services
SNP genotyping: technologies and biomedical applications
Article from Slate on GEDMatch being Acquired by Verogen
Article from BBC News on 23andMe Profiles Being Hacked
What is GDPR from gdpr.edu
 
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. 
 

What are sex trait variations and how do we support intersex individuals?

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.