Genetics-Related Podcasts
Patient Stories with Grey Genetics – “a genetic counselor who works in telegenetics interviews patients about their experiences. This is a great podcast for gaining prospective on the patient experience.” -2nd year student
DNA Today: A Genetics Podcast – “a genetic counseling graduate student interviews GCs, researchers, patient advocates, and genetics professors. Our very own Pitt GC alumna, Lauren Winter, was featured on episode #113!” -2nd year student
Base Pairs – “a genetics podcast run by science journalists out of Cold Spring Harbor Laboratory. Their audience base is broader than just GCs, so they do not only talk about clinical issues. They have some really great (and approachable) episodes, including a two-part series on “The Dark Matter of the Genome.” This is possibly my favorite genetics podcast. Tragically, they have not posted an episode since December 2018.” -2nd year student
Science Friday – “I have not personally listened to this one (yet), but a friend who works in a research lab highly recommended it. They do not specifically focus on genetics, but do have episodes about genetics topics.” -2nd year student
Movie Recommendations
The Fundamentals of Caring (available on Netflix) - A writer (Paul Rudd) retires after a personal tragedy and becomes a disabled teen's caregiver. When the two embark on an impromptu road trip, their ability to cope is tested as they start to understand the importance of hope and friendship.
GATTACA (available on Hulu) - Vincent Freeman (Ethan Hawke) has always fantasized about traveling into outer space, but is grounded by his status as a genetically inferior "in-valid." He decides to fight his fate by purchasing the genes of Jerome Morrow (Jude Law), a laboratory-engineered "valid." He assumes Jerome's DNA identity and joins the Gattaca space program, where he falls in love with Irene (Uma Thurman). An investigation into the death of a Gattaca officer (Gore Vidal) complicates Vincent's plans.
Crip Camp: A Disability Revolution (available on Netflix) - Down the road from Woodstock, a revolution blossomed at a ramshackle summer camp for teenagers with disabilities, transforming their lives and igniting a landmark movement.
Lorenzo’s Oil (available on Youtube) - About a little boy with a genetic condition, and his parents’ quest to find an answer and a treatment for him.
Simon Birch (available on Prime Video) - Simon Birch (Ian Michael Smith) and Joe Wenteworth (Joseph Mazzello) are boys who have a reputation for being oddballs. Joe never knew his father, and his mother, Rebecca (Ashley Judd), is keeping her lips sealed, no matter how much he protests. Simon, meanwhile, is an 11-year-old with short stature whose outsized personality belies his small stature. Indeed, he often assails the local reverend (David Strathairn) with thorny theological questions and joins Joe on his quest to find his biological father.
Far From the Tree (also a book by Andrew Solomon) (available on Hulu) - Parents of children who have Down syndrome, dwarfism or autism share intimate stories of the challenges they face.
Three Identical Strangers (available on Hulu) - Identical triplets become separated at birth and adopted by three different families. Years later, their amazing reunion becomes a global sensation, but it also unearths an unimaginable secret that has radical repercussions.
Book Recommendations
Abraham Lincoln’s DNA, by Philip Reilly (nonfiction) – “slightly out of date, but a collection of very interesting essays on genetics and historical figures.” -2nd year student
The Philadelphia Chromosome, by Jessica Wapner (nonfiction) – “about the discovery of the Philadelphia chromosome and development of targeted therapy for CML” -2nd year student
Idaho, by Emily Ruskovitch (fiction) – “possibly the most beautiful book I have ever read. Without spoiling anything, it is about a man with early onset dementia and has a lot to do with memory, grief, guilt, etc.” -2nd year student
Dark Blonde, by Belle Waring (poetry) – “a collection of poems written by a NICU nurse about her work experience” -2nd year student
Inside the O’Briens by Lisa Genova (fiction)- “a really good book about a family with Huntington’s disease” -2nd year student
ATLAS, by Katrina Vandenberg (poetry) – “a collection written by my friend and former professor whose first partner had hemophilia. He passed away in the 90’s due to AIDS. She talks about their relationship, in this book, and about her grief after his passing. Similar themes in her second book, THE ALPHABET NOT UNLIKE THE WORLD.” -2nd year student
Stone Mattress, by Margaret Atwood (short stories) – “I love Atwood, but the real reason this book is on this list is because it includes a compelling short story about a woman with porphyria.” -2nd year student
Future Home of the Living God, by Louise Erdrich (fiction) – “Dystopian read about a world in which evolution begins moving backward. It is written in letter-form, from the perspective of a Native American woman who is unexpectedly pregnant, to her child. Relevant for prenatal considerations, the role of religion, and women’s rights. (Margaret Atwood’s The Handmaid’s Tale similarly relevant!)” -2nd year student
The People in the Trees, by Hanya Yanagihara (fiction) – “very creepy book, but relevant for research ethics, cultural differences, criticism of academic culture” -2nd year student
Breathing for a Living – “written by a patient with Cystic Fibrosis as she waits for a lung transplant. It’s amazing and quick but sad.” -2nd year student
The Spirit Catches You and You Fall Down - Anne Fadiman – “A true story about a Hmong girl with epilepsy and her family. Not genetics related but dives really deep into multicultural issues. This happened in the 90s and there was a huge disconnect with the doctors and the family, both who were trying to do what they believed was best, and how treatment was impacted. The story is interspersed with historical background on the Hmong and those parts are fascinating as well.” -2nd year student
It’s Always Something- Gilda Radner – “Gilda’s story about her experience with ovarian cancer. It’s really funny (especially considering the heavy topic). One interesting aspect is that when her doctors stopped listening to her psychosocial concerns, she stopped treatment and turned to macrobiotics/crystals. She goes in depth on why she felt ignored, why the non-conventional treatment helped, and what it took for her to start conventional treatment again.” -2nd year student
Spelling Love with an X - Clare Dunsford- “Written by the mom of a child with Fragile X. Really interesting perspective of how hard it can be without a diagnosis. She was the first identified carrier and other family members ended up testing positive as well, so she also talks about how that changed her relationship with her sibs/nieces/nephews.” -2nd year student
Riding the Bus with my Sister - Rachel Simon – “Rachel Simon's sister Beth is a spirited woman who lives intensely and often joyfully. Beth, who has intellectual disability, spends her days riding the buses in her unnamed Pennsylvania city. The drivers, a lively group, are her mentors; her fellow passengers are her community. One day, Beth asks Rachel to accompany her on the buses for an entire year. This wise, funny, deeply affecting true story is the chronicle of that remarkable time. Rachel, a writer and college teacher whose hyperbusy life camouflaged her emotional isolation, had much to learn in her sister's extraordinary world.” -2nd year student
Webinars/modules/remote learning
resources
Oneinforty webinars http://oneinforty.org/upcoming-events/
WSRGN telegenetics resources: https://www.westernstatesgenetics.org/telehealth-resources/
ASHG Online Journal Club https://www.pathlms.com/ashg/courses/18113
MSRGN webinars: https://www.mountainstatesgenetics.org/projects/webinar/
Jackson Laboratory - free genetics educational modules https://learn.education.jax.org/
MSRGN genetics summit presentations (some video archived and some in PDF/PPT format): https://www.mountainstatesgenetics.org/events/msrgn-2019-gentics-summit/2019-genetics-summit-presentations-and-slides/
MSRGN - Indian Health Services (IHS) clinical rounds https://www.mountainstatesgenetics.org/projects/webinar/indiana-health-services-ihs-clinical-rounds-in-genetic-topics/
HRGN webinars https://www.heartlandcollaborative.org/about/projects/webinars/
HRGN video about individualized healthcare plans, and video comparing school plans for kids with special healthcare needs: https://www.heartlandcollaborative.org/about/projects/current-projects/ihp/
HRGN - Care Coordination: Empowering Families: https://www.heartlandcollaborative.org/files/2014/12/Facilitator-Notes-R4-12-10-14.pdf
HRGN - telegenetics manual: https://www.heartlandcollaborative.org/files/2014/07/HEARTLAND-TELEMEDICINE-MANUAL.pdf
MGN telegenetics intro videos: https://midwestgenetics.org/resources/telemedicine-resources/
Healthcare interpreter webinars/training https://hcinlearn.org/
MGN presentation about healthcare considerations for the Amish population: https://midwestgenetics.org/wp-content/uploads/The-Amish-Culture-Medical-Care-and-Genetic-Disorders.pdf
MGN webinars about NBS (free but must register): https://mediasite.mihealth.org/Mediasite/Channel/virtual_learning_collaborative
SERN video presentations https://southeastgenetics.org/education.php
SERN - webinar series on newborn screening considerations like emergency preparedness: https://www.newsteps.org/webinars-events/short-term-follow-webinar-emergency-preparedness-october-2018
Webinar series from PreventionGenetics: https://www.preventiongenetics.com/About/Resources/Webinars
Genetics in Special Education series (need account but I believe it is free): https://www.naset.org/index.php?id=3109
Webinars for clinicians (in genetics) in response to COVID19 (involves telegenetics): https://www.negenetics.org/content/covid-19-response
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