DNA Today: A Genetics Podcast

#93 Team Telomere

Members from Team Telomere (formerly DC Outreach), a community for telomere biology disorders join me for this episode. This panel includes patient advocate Katie Stevens, Dr. Sharen Savage, and Dr. Suneet Agarwal. They provide information and support services to families worldwide who are affected by these disorders, encourage the medical community’s research in finding causes and effective treatments, and facilitate improved diagnosis by educating medical providers.Katie Stevens is the Executive Director of Team Telomere. Her oldest child, Riley, is affected by a telomere disorder. Katie’s goal is to be an advocate and resource. She is also a member of Global Genes Foundation Alliance Advisory Council and a NORD member leader.Dr. Sharon Savage is the Chief of the Clinical Genetics Branch in the Division of Cancer Epidemiology and Genetics at the National Cancer Institute (NCI). She leads clinical, genetic, and epidemiologic studies of individuals and families at high risk of cancer. Dr. Savage’s research program in telomere molecular epidemiology incorporates population-based studies of telomere length and disease with genetic studies of telomere biology. She serves as a Medical Advisor for Team Telomere.Dr. Suneet Agarwal completed his M.D. and Ph.D. training at Harvard Medical School. He is currently an Assistant Professor in Pediatrics at Harvard Medical School, Principal Faculty at the Harvard Stem Cell Institute and Harvard Initiative in RNA Medicine, and Staff Physician in Hematopoietic Cell Transplantation at the Dana-Farber / Boston Children’s Cancer and Blood Disorders Center. Dr. Agarwal's research and clinical work is focused on the mechanisms and treatment of genetic blood disorders. He leads a multi-center bone marrow transplant clinical trial for dyskeratosis congenita, and his lab is working on new therapeutic approaches for telomere diseases. He also serves as a Medical Advisor for Team Telomere.This Episode We DiscussKatie’s Son’s Diagnostic JourneyDyskeratosis Congenita and Telomere Biology DisorderPrevalenceSymptomsAge of OnsetAssociated GenesDiagnosis ProcessTreatmentsLatest ResearchHow Team Telomere Helps Affected FamiliesBecoming a Bone Marrow Donor > BeTheMatch.orgStay tuned for the next new episode of DNA Today on November 2nd, 2018. New episodes are released on the first and third Fridays of the month. Can’t wait? There are over 90 episodes to explore in the meantime.See what else I am up to on Twitter, Instagram, Facebook and iTunes. Questions/inquiries can be sent to Kira at info@DNApodcast.com.

#92 Dr. Erin Young on Pain Genetics

Dr. Erin Young discusses the role genetics play in pain susceptibilities. She is an Assistant Professor of both the School of Nursing and Genetics and Genomic Sciences at the University of Connecticut. Her career has been focused on studying genetic contributions to pain susceptibility, for which she has published numerous papers sharing her findings. She received her BA at Wesleyan College, and her MA and PhD at Kent State University. She also completed two postdoctoral fellowships, at Texas A&M University and the University of Pittsburgh Center for Pain Research.This Episode We DiscussThe Role Genetics Plays in our Experience of PainWhy People have Differences in Pain ResponsesGenes and Pathways Involved in PainEnvironment Factors Affecting Pain SusceptibilitySomatic vs. Visceral Pain BehaviorsPain Mechanisms Behind Inflammatory Bowel Disease (IBD)Animals Models Used and Translating Findings to Human PainOpportunities for Integrating Genetic Analysis into Precision Healthcare InitiativesTo learn more about Dr. Erin Young, check out her profile on UCONN’s InCHIP and School of Nursing website. Dive more into her research explore painresearch.uconn.edu and read one of her publications on the topics we discussed, “Genetic Basis of Pain Variability: Recent Advances”. To stay updated with Dr. Young, check out her LinkedIn and Twitter profiles.Stay tuned for the next new episode of DNA Today on October 5th, 2018. New episodes are released on the first and third Fridays of the month. Can’t wait? There are 90 other episodes to explore in the meantime.See what else I am up to on Twitter, Instagram, Facebook and iTunes. Questions/inquiries can be sent to Kira at info@DNApodcast.com.

#91 Ellen Matloff on Direct-To-Consumer Genetic Testing

Ellen Matloff is the President and CEO of My Gene Counsel. Ellen is the founder and former director of the Cancer Genetic Counseling Program at Yale School of Medicine.Ellen has authored more than 50 scientific publications in the field, is an established educator, lecturer and media spokesperson and has received national awards for her ongoing patient advocacy efforts. She is an outspoken patient advocate in many areas, most notably as a plaintiff in the 2013 BRCA gene patent case that went before the Supreme Court. This decision has led to drastically lower prices of genetic testing, making it possible for more patients to afford this technology. Ellen is a Forbes.com contributor in the area of genetic counseling, testing, and digital health.As genetic testing became more common and also more complex, she has served as the senior author on several publications since 2010, all documenting errors in the interpretation of genetic test results, from all over the US and Canada. From these experiences, Ellen created My Gene Counsel and its associated digital tools that can be used in parallel with genetic testing to help ensure that results are used accurately and effectively. These tools are scalable, affordable, are available to the consumer immediately, and on their own device, and - importantly - when your genetic test results are reclassified, or medical management recommendations change, you receive a text message or email.Disclaimer, I (host Kira Dineen) also work for Ellen at My Gene Counsel as the Communications Lead.On This Episode We Discuss:Defining direct-to-consumer (DTC) testsTypes are available to consumersDifference between medical grade and DTC genetic testsAccuracy of DTC genetic testsWhat to know before choosing a DTC testExamples of when a DTC test may be more appropriate than a medical grade test and vice versaWhy healthcare providers can’t afford to ignore DTC anymorePotential implications of sending a sample to a DTC companyBenefits of signing up for My Gene CounselCheck out My Gene Counsel’s website, Twitter, Facebook and LinkedIn pages for more information.Stay tuned for the next new episode of DNA Today on October 19th. New episodes are released on the first and third Fridays of the month. See what else I am up to on Twitter, Instagram, Facebook and iTunes. Questions/inquiries can be sent to Kira at info@DNApodcast.com.

#90 Erica Ramos on NSGC

Erica Ramos is the 2018 President of the National Society of Genetic Counselors (NSGC). She builds products, programs and strategy in the genomics and genetic counseling arenas with expertise in rare disease and predictive genome sequencing. Erica is currently director and head of Clinical & Business Development for Geisinger National Precision Health.This Episode We Discuss:Elevator Pitch of Genetic CounselingRamos’ Career BackgroundGoal of NSGCRamos’ role as President of NSGCBiggest Challenges in the Genetic Counseling Field2018 NSGC Professional Status SurveyExecutive Summary Available to Public94% of GCs who took part in NSGC’s 2018 professional status survey reported being satisfied with the profession.An average full-time GC earns a salary of $88,000 USD.There are over 4,600 certified GCs in North America, this is an increase of 95% compared to the number just 10 years ago in 2008.There are 43 accredited graduate level training programs in North America.Growth rate of the career between 2016-2026 is 29%, the average for all occupations is 7%.2017 NSGC Member Benefits, Needs and Satisfaction SurveyAnnual NSGC Conference, November 2018 in Atlanta, (See you there!)Resources NSGC ProvidesFindAGeneticCounselor.comAboutGeneticCounselors.comGenetic Counselor and You Webinar SeriesNSGC Podcast Series: Leading Voices in Genetic CounselingNSGC Digital Ambassadors (aka The Gene Pool)Twitter List with all of us listedFor updates from Erica Ramos, follow her on Twitter. And explore some of the resources above that NSGC provides the public.Stay tuned for the next new episode of DNA Today on October 5th, 2018. New episodes are released on the first and third Fridays of the month. Can’t wait? There are 89 other episodes to explore in the meantime.See what else I am up to on Twitter, Instagram, Facebook and iTunes. Questions/inquiries can be sent to Kira at info@DNApodcast.com.

#89 Dr. Andrew Ury on Electronic Health Records

Dr. Andrew Ury is the CEO and Founder of ActX, one of the leading companies in electronic health record integrated genomic decision support. He previously founded and was CEO of the first commercial electronic medical record company, Practice Partner. He is also the co-founder of one of the leading practice-based research networks, PPrNet. Dr. Ury helped found and was twice the vice-chair of the Electronic Health Record Assoc (EHRA). He is a graduate of Stanford Medical School.This Episode We Discuss:Definition of Electronic Health Records (EHRs)EHRs History, Evolution and FutureDr. Ury’s Perspective as a Founder of the TechnologyCurrent EHR Methods and SystemsActX’s Role in Integrating EHRs in Genomic Decision SupportDirect-To-Consumer (DTC) Genetic TestingFocused vs Broad ScreeningFDA Regulation on DTC Genetic TestingPharmacogenomics and TestingFuture Predictions of Integrated Personalized Medicine and Patients’ RoleWant to learn more about ActX? Check out their website, Facebook page, and Twitter account.Stay tuned for the next new episode of DNA Today on September 21st. New episodes are released on the first and third Fridays of the month. Can’t wait? There are 88 other episodes to explore in the meantime.See what else I am up to on Twitter, Instagram, Facebook and iTunes. Questions/inquiries can be sent to info@DNApodcast.com.

#88 Ira Pastor on Regeneration

Ira S. Pastor is the CEO of Bioquark, a life sciences company, developing proprietary combinatorial biologics for the regeneration and repair of human organs and tissues. Ira has over 30 years of pharmaceutical experience. He serves as a board member at multiple companies and organizations including RengerAge, the Reanima Project, The World Academy of Medical Science and the World Economic Forum’s Human Enhancement.This Episode We Discuss…Regeneration and repair of human organs and tissuesNatural regenerative capability of humansEffect of agePotential role of telomeraseBioquark’s area of focus in regenerationConditions that could potentially benefit from regeneration researchGenetics role in regenerationResearch on animals regenerative abilitiesGrowing organs outside the human body and its impact on the organ donor systemSomatic reversion and how it differs from other gene therapiesLearn more on Bioquark’s website and stay updated by following them on Facebook.Stay tuned for the next new episode of DNA Today on September 7th, 2018. New episodes are released on the first and third Fridays of the month. See what else I am up to on Twitter, Instagram, Facebook and iTunes. Questions/inquiries can be sent to info@DNApodcast.com.

#87 Genetic Counseling Grad School Apps (Part 1)

A panel of four incoming genetic counseling graduate schools discuss the application process. This is part one of two podcasts, discussing how to gather the experience and classes to have a competitive application. Early next year (2019) we will also release a follow up episode focusing on the second part of the application process: interviews, ranking and matching.We also surveyed over 50 incoming genetic counseling students (enrolling Fall 2018) who went through the last application process, which was also the first time the Match System was used. Their feedback has been summarized on the blog post with this episode on DNApodcast.com. We hope prospective and applying students find this summary and episode helpful!The Incoming Genetic Counseling Student PanelKira Dineen hosts DNA Today: A Genetics Podcast (and radio show), which was founded in 2012 and features over 85 episodes interviewing genetic counselors, patient advocates and other genetic experts. The show was nominated in the 2015 and 2016 Podcast Awards. She is the Communications Lead at My Gene Counsel, a digital genetic counseling company. Kira is also a member of National Society of Genetic Counselors’ Digital Ambassador Program (aka #NSGCGenePool). She received her Bachelor's of Science degree in Diagnostic Genetic Sciences with a concentration in Cytogenetics at the University of Connecticut. Kira is excited to be in Sarah Lawrence College’s Genetic Counseling Class of 2020.Brynna Nguyenton will be a first year genetic counseling student at The Keck Graduate Institute. She earned her BS in Biology with a minor in Cognitive and Behavioral Neuroscience from San Diego State University in 2016. Brynna’s professional interests include accessible healthcare, neuropsychiatric and cancer genetics, and promoting scientific literacy and education in the community. She is also the lead staff contributor of the genetic counseling blog, Maps and Genes. Outside of genetic counseling, she enjoys thrift shopping, traveling and trying new foods, and spending time outdoors with her Husky/Shepherd puppy, Kenobi.Katie Church is a member of the 2020 Genetic Counseling class from The University of Alabama at Birmingham. Originally from Colorado, in 2017 she graduated with a Bachelors of Science in Biology with minors in Psychology and Spanish from the University of Nebraska-Lincoln. Throughout undergrad she spent time volunteering with adaptive recreation and a domestic violence hotline, helping with research, shadowing various genetic counselors, and staying active in her sorority. Post graduation she worked as a research assistant in a fly genetics lab and a high school cheer coach.Brianna Van den Adel was born and raised in the small northern town of Kitimat, B.C., Canada. She received her Bachelor of Science in Biochemistry & Molecular Biology and Psychology at The University of Northern British Columbia in 2017. With her recent acceptance into the Master of Genetic Counseling program at The University of British Columbia, she looks forward to completing her degree and working towards introducing the field of genetic counseling to Prince George, and serving the northern communities of British Columbia.On This Episode We Discuss:Overall Application TimelineCost of our Application ProcessesPreparation for Applications & Helpful ResourcesPrerequisites, Extracurricular Activities & Recommended ExperiencesFinding Genetic Counselors to ShadowWriting the Personal StatementsLetters of Recommendation: How Many to Request & Who To AskDifferences Applying as an International Student (Outside US)Deciding Schools: Features to Focus on & Number to Apply toStay tuned for the next new episode of DNA Today on August 17th. New episodes are released on the first and third Fridays of the month. See what else I am up to on Twitter, Instagram, Facebook and iTunes.Questions/inquiries about the application process for the four of us can be sent to info@DNApodcast.com. Interested in getting in contact with a current student at a specific school? Shoot us an email and we will work our networks to try and connect you!

#86 Dr. Michael Fossel on the Telomere Theory of Aging

Dr. Michael Fossel is the world’s foremost expert on the clinical use of telomerase for age-related diseases. In 1996, he wrote the first book on the telomerase theory of aging, Reversing Human Aging, and has published the sole medical textbook on the topic. Most recently he published The Telomerase Revolution which was named one of the five best science books of the year by the Wall Street Journal.Dr. Fossel earned his PhD and MD from Stanford University, where he taught neurobiology and research methods. He has lectured at the National Institutes of Health and the Smithsonian Institution and has appeared on Good Morning America, CNN, BBC, and NPR among others. He is currently working to bring telomerase to human trials for Alzheimer's disease with his company, Telocyte.On This Episode We Discuss…Telomere theory of agingAge related diseases telomerase potentially prevent/treatTelomerase product effects on cancer preventionCommon misconceptions of agingChanging public perspective on the potential of reversing agingRole of family history in longevityRecent aging/telomerase researchCRISPR’s use with telomeraseScientifically validation of current anti-aging productsLearn more on Michael Fossel’s website. I also recommend his book, The Telomerase Revolution.Stay tuned for the next new episode of DNA Today on August 3rd, 2018. New episodes are released on the first and third Fridays of the month. See what else I am up to on Twitter, Instagram, Facebook and iTunes. Questions/inquiries can be sent to info@DNApodcast.com.

#85 Sarah McAnulty on Squids

Sarah McAnulty is a squid biologist and science communicator. She founded Skype A Scientist, matching classrooms with scientists for QnA sessions. Sarah is also a Ph.D. Candidate and Scientist at the University of Connecticut. She studies squids and their symbiosis with bioluminescent bacteria.On This Episode We Discuss:Skype A ScientistEffect ways to communicate scienceDifferences between squid species, which ones Sarah works withSquid research goalsThe symbiosis relationship between the squid and bacteriaSquid’s blood, microbiome, and immune systemSarah’s inspiration to pursue a squid research careerAdvice/resources for students interested researchSarah is very active on Twitter and Instagram providing squid fun facts, videos, pictures and really everything cephalopod related. She also has a Tumblr, Youtube page and website for even more information.Stay tuned for the next new episode of DNA Today on July 20th, 2018. New episodes are released on the first and third Fridays of the month. See what else I am up to on Twitter, Instagram, Facebook and iTunes. Questions/inquiries can be sent to info@DNApodcast.com.

#84 CRISPR Bioethics

In this podcast discussion we peek into the world projected by J.D. Lasica in his new genetics thriller novel, Biohack. We consider and debate a few ethical issues that arise in the book focusing on the potential implications CRISPR has for our future.J. D. Lasica is an author, Silicon Valley entrepreneur and public speaker. He spoke at the United Nations in 2012 about how to use social media to combat global poverty, and he has given talks on four continents. His new book Biohack is a high-tech genetics thriller.Dr. Katie Hasson, is the Program Director on Genetic Justice at the Center for Genetics and Society. She was an assistant professor of sociology and gender studies at the University of Southern California. She has researched and written on reproductive technologies and women’s health.On This Episode We Discuss:The genetics thriller novel Biohack and the bioethical issues it raisesPotential scientific advances with CRISPR technologyThe bioethical implications of those advancementsWhich countries these advances are most likely to occurThe bioethical debate change between PGD embryo selection and CRISPR edited embryo, prior to in vitro fertilizationPotential restrictions on which genes can be manipulated, disease related vs physical traitsWant to delve further into the bioethics of CRISPR? Check out this article from guest Dr. Katie Hasson about designer DNA not being just for designer babies. Another interesting article that complements our discussion in the podcast is Nathaniel Comfort’s “Can We Cure Genetic Diseases Without Slipping Into Eugenics?” Intrigued by our conversation about a child having three biological parents (this is not science fiction) Leah Lowthrop wrote articles about the impact in the fertility industry and the slippery slope this technique could become. Genetics and Society has many more articles to explore!If you are one of the first ten people to sign up for JD’s J.D.’s Best of Indie email list you will receive a free copy of the “Biohack” ebook plus the Hacked Celebrity Files, a full-color PDF outlining Hollywood celebrities and historical figures targeted by the biotech company in the novel. Can’t wait to see if you have won? Buy the book on Amazon for $1 or read it for free through amazon Kindle Unlimited.Be sure to give both J.D. Lasica and Genetics and Society a follow on Twitter.Stay tuned for the next new episode of DNA Today on July 6th, 2018. New episodes are released on the first and third Fridays of the month. See what else I am up to on Twitter, Instagram, Facebook and iTunes. Questions/inquiries can be sent to info@DNApodcast.com.