DNA Today: A Genetics Podcast Kira Dineen

Over the next two episodes, we are discussing an important topic in genetic counseling that definitely is not talked about enough, burnout and transitioning to roles outside of the field. Joining us for this conversation are genetic counselors, Tiana Rogers and Nira Johnson.
Tiana Rogers is an aspiring digital designer and board-certified genetic counselor with direct patient care experience in prenatal and cancer genetics. She is currently a Content Consultant at My Gene Counsel where she investigates gene- and variant-specific updates and translates them into plain language for patients and caregivers, and a Genetic Counselor at Grey Genetics. She received her B.S. in Evolutionary Biology from Stony Brook University, and her M.S. from the Joan H. Marks Graduate Graduate Program in Human Genetics at Sarah Lawrence College (same class as our host Kira Dineen!). 
Nira Johnson is a genetic counselor turned graphic designer, who spent more than 10 years in cancer and prenatal genetics (mostly in industry) and about 5 years in graphic design. Now, her main goal is making accurate, patient- and provider-focused educational materials as well as science-focused art. She currently works as a graphic designer and consultant for Global Genes, and a marketing and development consultant for Clover Genetics. Nira also founded and owns her own freelance medical graphic design agency, Designs by NKJ! She received her AssociatesDegree in Graphic Design from Rasmussen University, and her M.S. in Genetic Counseling from Brandeis University. 
On This Episode We Discuss:

Tiana’s and Nira’s journeys to becoming genetic counselors and the most rewarding aspects of their roles  


Factors that can contribute to GC burnout


Challenges our guests faced while working in clinic and non-direct patient setting and how did they impacted their mental health


Strategies and resources to help cope with burnout and support to address mental health concerns in the GC field


How the field of genetic counseling and healthcare organizations can better address burnout and mental health challenges among practitioners and support well-being and career satisfaction 


Pursuing alternative career paths outside of genetic counseling and how GC skills can transfer to other roles

While recording this episode, both of our guests were adamant about continuing this important conversation surrounding burnout in genetic counseling, and they encourage anyone who is currently battling burnout or trying to prevent it to reach out to them via LinkedIn here: Tiana Rogers and Nira Johnson. Or email into info@DNAtoday.com and we will forward your message to them directly.
Be sure to check out our social media channels for details to enter our giveaway of artwork from Nira! 
Stay tuned for the next new episode of DNA Today on September 29th, 2023 where we’ll be continuing our conversation with Tiana and Nira on genetic counseling burnout! New episodes are released every Friday. In the meantime, you can binge over 255 other episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Today”. Episodes since 2021 are also recorded with video which you can watch on our YouTube channel.  
DNA Today is hosted and produced by Kira Dineen. Our social media lead is Corinne Merlino. Our video lead is Amanda Andreoli. Our Outreach Intern is Sanya Tinaikar. Our Social Media Intern is Kajal Patel. And our Graphic Designer Ashlyn Enokian.
See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, DNAToday.com. Questions/inquiries can be sent to info@DNAtoday.com. 

This episode was originally released on It Happened To Me: A Rare Disease podcast, where our host Kira Dineen is the Executive Producer. Sometimes Kira joins the podcast as a guest host especially for genetic topics, like in this episode. 
It Happened To Me is a rare disease and medical challenges podcast. The mission of the show is to create community as listeners confront the toughest challenges in life. All of us will experience health hardships. The real question is, how do we adapt? That’s the focus of It Happened To Me. The podcast explores how to overcome limitations and live a full and satisfying life. Drawing on their own health challenges, hosts Cathy Gildenhorn and Beth Glassman interview guests who share stories and research to help others succeed in the face of difficult health obstacles.
In this episode, parents Bonnie and Will Alms share their son's diagnostic odyssey with Bardet Biedl Syndrome. Everett’s condition is a rare genetic disorder.  People may suffer symptoms that include retinal degeneration, obesity, reduced kidney function, extra digits of the hands or feet, as well as many other manifestations. You can learn more about Everett in this article. 
We are sharing this episode in preparation for Bardet Biedl Syndrome awareness day on September 24th, 2023! Join us in sharing this episode on social media to raise awareness. 
This interview explores…
Basics of Bardet Biedl Syndrome (BBS)
What their OB/GYN discovered 
Meeting with prenatal genetic counselor
Testing during pregnancy and after birth
Sequence of tests leading to BBS diagnosis
When and how they learned about the condition
Coping with the diagnosis news
Timing of Everett's BBS diagnosis
Outlook for quality and length of Everett's life
Everett's current quality of life and symptoms
Experience with seizures, onset, and medication
Vision loss, adaptation, and legal blindness
Dealing with obesity or insatiable hunger
Participation, goal and outcome of the clinical trial
Surgeries for extra fingers and toes
Everett's current status as a teenager
Additional symptoms developed since childhood
Remaining BBS symptoms not experienced by Everett
BBS community, connections, and resources
Advice for parents of undiagnosed diseases
 
This was the first part of the conversation, for the second half check out Episode 12 of It Happened To Me on Apple Podcasts, Spotify, or any other podcast player by searching, “It Happened To Me”. Learn more about the show on their website. 
 
Stay tuned for the next new episode of DNA Today! New episodes are released every Friday. In the meantime, you can binge over 250 other episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Today”. Episodes since 2021 are also recorded with video which you can watch on our YouTube channel.  
 
DNA Today is hosted and produced by Kira Dineen. Our social media lead is Corinne Merlino. Our video lead is Amanda Andreoli. Our Outreach Intern is Sanya Tinaikar. Our Social Media Intern is Kajal Patel. And our Graphic Designer Ashlyn Enokian.
 
See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, DNAToday.com. Questions/inquiries can be sent to info@DNAtoday.com. 
 

In this episode we are discussing inborn errors of immunity, with a particular focus on chronic granulomatous disease (CGD). Joining us for this episode is rare disease advocate, Felicia Morton, and genetic counselor, Torry Howell. 
 
Felicia Morton, is the Founder and Executive Director of the CGD Association of America. Felicia has been a well-known advocate for the CGD community for more than a decade armed with her family’s personal experience. 
 
Torry Howell, is a clinical genomic liaison at Blueprint Genetics. She received her Master of Science in Genetic Counseling from the University of Texas and MD Anderson Cancer Center in Houston, Texas.
On This Episode We Discuss:
Inborn errors of immunity (IEIs) and types of conditions that fall under this umbrella term
Genetic testing for IEIs and how earlier diagnosis can impact a patient’s treatment decisions
Chronic granulomatous disease (CGD)
Felicia’s personal experience as a carrier of CGD and parent of a son with CGD
Stem cell treatment for CGD
The importance of collaboration between patients, caregivers, advocacy groups, and medical experts in improving the lives of those affected by CGD and IEIs
 
Important links and resources mentioned during the episode:
NIH’s Division of Allergy, Immunology, and Transplantation
CGD Association of America
Human Inborn Errors of Immunity: 2022 Update on the Classification from the International Union of Immunological Societies Expert Committee 
 
Stay tuned for the next new episode of DNA Today on September 15th, 2023! New episodes are released every Friday. In the meantime, you can binge over 250 other episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Today”. Episodes since 2021 are also recorded with video which you can watch on our YouTube channel.  
 
DNA Today is hosted and produced by Kira Dineen. Our social media lead is Corinne Merlino. Our video lead is Amanda Andreoli. Our Outreach Intern is Sanya Tinaikar. Our Social Media Intern is Kajal Patel. And our Graphic Designer Ashlyn Enokian.
 
See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, DNAToday.com. Questions/inquiries can be sent to info@DNAtoday.com. 

This episode was originally recorded for It Happened To Me: A Rare Disease podcast, where our host Kira Dineen is the Executive Producer. Sometimes Kira joins this podcast as a guest host especially when there will be genetic topics, like in this episode. 
 
This episode was extra special as DNA Today’s Communications Lead Corinne Merlino was the guest! Corinne was also a guest on Episodes 245 and 246 where we answered listener’s questions about the genetic counseling graduate school application process. This was recorded in NBC Universal’s Stamford Studios so we recommend watching it on YouTube! 
 
Corinne was born with Pierre Robin Syndrome, a rare congenital birth defect that affects craniofacial development. Navigating life as a patient from a young age sparked her passion for science, medicine, and advocacy, and ultimately inspired her to pursue a career in genetic counseling.
 
Corinne currently works as a clinical research coordinator for -The Palliative and Advanced Illness Research- or (PAIR) Center- at The University of Pennsylvania. There she supports multiple studies focused on improving the effectiveness and efficiency of specialty palliative care services for seriously ill patients. 
 
In 2020, Corinne received her B.S. in Biology and Healthcare Ethics from Saint Joseph's University. Corinne is currently a graduate student in genetic counseling at the University of Pennsylvania.
 
During the episode we mentioned Philly Phaces and the book and film Wonder. 
 
Stay tuned for the next new episode of DNA Today on September 8th where we will discuss inborn errors of immunity with a Blueprint Genetics clinical genomic liaison, Torry Howell and the Founder and Executive Director of the CGD Association of America, Felicia Morton. 
 
New episodes are released every Friday. In the meantime, you can binge over 250 other episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Today”. 
 
See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, DNAToday.com. Questions/inquiries can be sent to info@DNAtoday.com. Episodes in the last three years have also been recorded with video which you can watch on our YouTube channel.  
 
DNA Today is hosted and produced by Kira Dineen. Our Communications Lead is Corinne Merlino. Our Video Lead is Amanda Andreoli. Our Outreach Intern is Sanya Tinaikar. Our Social Media Intern is Kajal Patel. And our Graphic Designer is Ashlyn Enokian.
 

Currently, an overwhelming number of DNA samples used for research are from people of European ancestry, making many populations from across the globe underrepresented in genomics research. (NHGRI) In this episode, we explore an important issue in healthcare, diversifying genetic research, with two experts from 23andMe
 
Dr. Ruth Tennen is a product scientist at 23andMe. In this role Dr. Tennen develops new genetic health reports with the goal of helping 23andMe customers access, understand, and benefit from the human genome. Before joining 23andMe, she served as a science policy fellow at the State Department, helping promote science education and entrepreneurship in Africa, and as a lecturer at Stanford, teaching courses on experimental design, bioethics, and cancer. Ruth loves learning about and talking about science, and throughout her career, she has worked to inspire budding scientists by mentoring and teaching students at local schools, hospitals, and museums. Ruth received her bachelor's degree in molecular biology from Princeton and her Ph.D. in cancer biology from Stanford.
 
Dr. Anjali Shastri is a Senior Program Manager at 23andMe. A research scientist by training, she manages programs that increase access to genetic testing, improve representation in genomic studies, and further impactful genetics research (like 23andMe's 1 million-participant COVID-19 Study), so that more people can benefit from 23andMe's health and ancestry products, services, and research. Previously she worked at the U.S. Department of State, Department of Health and Human Services, and the National Academy of Sciences, advancing science-based policies and coordinating global health projects. Anjali received her PhD in Immunology from Stanford University where she was a Diversifying Academia and Recruiting Excellence fellow and National Science Foundation graduate research fellow. Throughout her training and career, Dr. Shastri has led efforts to improve representation and health outcomes for all people.
On This Episode We Discuss:
Changes in recent years with the diversity in genetic research
The importance of increasing the amount of diversity in genetic research and the impact it can have on improving healthcare outcomes 
Roles that genetic testing and personalized medicine can play in addressing health disparities among different populations
23andMe’s collaboration with Morehouse School of Medicine, the first such collaboration between a genetic testing company and a Historically Black Medical College (HBMC), and how it aims to improve diversity in genetic research specifically for sickle cell disease
Challenges faced in expanding diversity in genetic research, and how is 23andMe working to overcome them
Goals of the African American Sequencing Project
Information included in 23andMe’s sickle cell screening report and challenges and considerations when it comes to providing genetic information related to sickle cell disease when it’s direct-to-consumer 
23andMe’s goals and initiatives for diversifying genetic research and improving healthcare outcomes for all populations
 
Links to studies, websites, and press-releases mentioned in this episode:
Press release: Morehouse School of Medicine, Sickle Cell Foundation of Georgia and 23andMe Launch Sickle Cell Carrier Status Awareness Program 
The U.S. Public Health Service Syphilis Study at Tuskegee
Low LDL and PSK9 study
Georgia Sickle Cell Disease Foundation
 
DNA Today Episodes related to diversifying genetic research and mentioned in episode:
#214 2022 Genetics Wrapped with Eric Green
#117 Dr. Janina Jeff on African Genomes
#34 Henrietta Lacks (HeLa cells)
 
Stay tuned for the next new episode of DNA Today on September 1st, 2023 where we’ll be sharing an episode of It Happened to Me podcast featuring our Communications Lead Corinne Merlino, who shares her experience of having Pierre Robin Syndrome, just in time to in honor of the condition’s awareness day! 
 
New epi

We are celebrating the 250th episode of DNA Today and the 10 year anniversary of Orphan Black premiere with Madeline Ashby who was a writer for Orphan Black: The Next Chapter. In our conversation we will dive into some of the genetic concepts explored in the show. Warning there will be spoilers for both the TV show and the podcast!!!
 
Madeline Ashby (she/her) is an author among many other creative roles and talents. She graduated from the first cohort of the M.Des. in Strategic Foresight and Innovation programme at OCADU in 2011. It was her second Masters degree. (Her first, in Interdisciplinary Studies, focused on cyborg theory, fan culture, and Japanese animation!) Since 2011, she has been a freelance consulting futurist specializing in scenario development and science fiction prototypes. Her work has appeared in BoingBoing, Slate, MIT Technology Review, WIRED, The Atlantic, and many other notable places. She penned a trilogy of novels starting with vN: The First Machine Dynasty along with other books. Check out her IMDb profile for more info.
 
She is also a writer on our host Kira Dineen’s favorite science fiction podcast of all time: Orphan Black: The Next Chapter. Orphan Black is a thought-provoking sci-fi thriller that explores a world of clones. The main character Sarah runs into someone who looks like her twin, and Sarah figures out she is actually her clone. The story takes off from there of Sarah discovering she is just one of many genetically identical clones, each with their own unique personality and skills. They all navigate a treacherous web of deceit, corporate intrigue, and scientific experimentation. The show ran for 5 years between 2013-2017 before the podcast spinoff was announced. 
On This Episode We Discuss:
The motivation behind continuing the Orphan Black story in podcast format
How the show explores the issue of genetic privacy and the downstream effects on relatives of the clones and real-world considerations in genetic data sharing and data privacy
How plausible the idea of bio weapons and designing viruses to attack specific individuals based on SNPs, touched on in the show, is in reality and the ethical implications
Ethical violations explored in the podcast including uninformed, forced vaccination, and how they parallel real-world bioethical concerns
Storing genetic data in the podcast and tv show versus the real-world
 
We talked a lot about science fiction on this episode, but we wanted to share some exciting developments in the real-world of genetic research that could allow same-sex couples to share biological children someday:
TIME: Get Ready for Embryos From Two Men or Two Women
NPR: Startup aims to make lab-grown human eggs, transforming options for creating families 
 
Stay tuned for the next new episode of DNA Today on August 25th, 2023! New episodes are released every Friday. In the meantime, you can binge over 250 other episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Today”. Episodes since 2021 are also recorded with video which you can watch on our YouTube channel.  
 
DNA Today is hosted and produced by Kira Dineen. Our social media lead is Corinne Merlino. Our video lead is Amanda Andreoli. Our Outreach Intern is Sanya Tinaikar. Our Social Media Intern is Kajal Patel. And our Graphic Designer Ashlyn Enokian.
See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, DNAToday.com. Questions/inquiries can be sent to info@DNAtoday.com.