Genetic Counseling Episode Addendum (Resources + Links!)
As a follow up to our episode with Laynie Dratch of Penn Medicine, here is some more information and resources on genetic counseling. Many of which were mentioned in today’s epsiode which you can listen to here.
There are two main ways to access genetic counseling with the option of genetic testing: clinical and research.
1. Clinical – this involves meeting with a GC in the same way you would typically meet with any health care provider. This can be in person or by telehealth depending on the institution and the state you live in (see find a GC tool resource). It is important to keep GINA in mind before scheduling a GC visit that will be documented in your medical record. Usually insurance covers most if not all of the cost of a GC visit and any genetic testing. There are also self-pay options available at some labs.
2. Research – what this looks like depends on the specific protocol. At Penn, the best way to access GC/GT through research is via the ALLFTD study (which has sites throughout the US). In this protocol you can meet with a GC and have GT if you want. You don’t have to learn your results to be in the study. The results are kept in your research record and are done under a study ID, not your name. This can be one layer of protection against discrimination, but still should consider GINA (happy to elaborate). The cost of testing and counseling are covered by the study for ALLFTD. Whether you can get results back depends on the protocol / the institution so it is important to ask about this when consenting to a study.
There are also some sponsored programs (such as those offered by trials or gene therapy companies) that might offer genetic testing with or without counseling options. Testing options might be more limited (ie single gene instead of broad testing).
General Support and Educational Resources
Find a genetic counselor tool: https://findageneticcounselor.nsgc.org/
FTD Disorders Registry genetics page: https://ftdregistry.org/genetics-ftd
Penn FTD Center website: https://www.med.upenn.edu/ftd/
Dementia Society of America: Https://www.dementiasociety.org/
ALS Association website: http://www.alsa.org/
I AM ALS: https://iamals.org/
International Alliance of ALS/MND Associations: https://www.als-mnd.org/
EverythingALS: https://www.everythingals.org/
Penn Comprehensive ALS Center website: https://www.pennmedicine.org/for-patients-and-visitors/find-a-program-or-service/neurology/neuromuscular-disorders/penn-comprehensive-als-center
Information on GINA: http://ginahelp.org/
Previous Conference Recordings & Other Media
Penn Familial FTD/ALS Conference Previous Recordings
Inaugural event 2021 recording: https://vimeopro.com/ajievents/familialftd
2nd annual 2022 recording: https://mediasite.med.upenn.edu/mediasite/Play/6660f7e28d914763bdf0b951b7da5c3e1d
3rd annual 2023 recording: https://mediasite.med.upenn.edu/mediasite/Play/0666ec86da2e4b13b54832e286009ded1d
Annual Penn FTDC Caregiver Conference June 2021 virtual conference recording: https://mediasite.med.upenn.edu/mediasite/Play/6c61a750b7004bc19d43ac3ead207a9b1d
More Research Resources
Information on the ALLFTD Research Study: https://www.allftd.org/ (and don’t forget to checkout our mini series listed on thier site!)
To look for current research studies you can visit: https://clinicaltrials.gov/
Thank you again to Laynie Dratch for coming on the podcast!
Laynie Dratch, ScM, CGC is a genetic counselor in adult neurology at the University of Pennsylvania in Philadelphia, PA, specializing in Frontotemporal Degeneration (FTD) spectrum disorders. She helps families with adult-onset conditions such as FTD, Amyotrophic Lateral Sclerosis (ALS), Alzheimer’s Disease (AD), and others, navigate genetic testing options and cope with their diagnoses through research and clinical encounters. Her research interests include the lived experiences of individuals with or at risk of developing FTD, issues in predictive genetic testing, and genetic counseling access and service delivery. She is a co-founder of the annual Penn Familial FTD/ALS Conference, as well as the co-founder and chair of the ALS/FTD Working Group within the National Society of Genetic Counselors. Laynie graduated summa cum laude from Colgate University with a BA in neuroscience and a minor in psychology. She completed her master’s in genetic counseling at the Johns Hopkins University and the National Institutes of Health.
