Discover and read the best of Twitter Threads about #GCchat
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In a great journal club from @GenomeMed team, I learned about bibliotherapy- books to help kids process a diagnosis. I’d like to collect a list of these, so please add to this list with any you know about 👇🏼
#GeneChat #gcchat @GeneticCouns @TheACMG @GeneticsSociety
#GeneChat #gcchat @GeneticCouns @TheACMG @GeneticsSociety
Today I learned about Robot Music: A Story for Kids with Li-Fraumini Syndrome and Other Cancer Predispositions #lifrauminisyndrome
amzn.to/3KL1zN1
amzn.to/3KL1zN1
There is also FAP & Me fapgene.com/fapkidsbook.ht…
(Purchase link is broken @GeneticCouns)
#fap #familialadenomatouspolyposis
(Purchase link is broken @GeneticCouns)
#fap #familialadenomatouspolyposis
As a genetic counselor who first took and passed Boards in 2005, and will repeat them in 2022 due to inadvertent lapse in certification status, I have so many reflections on WHAT a GC needs to know now vs. then and also on HOW one prepares. Read more for reflections #GCchat 1/11
Back in the day the exam was only offered every 3 years. It was done by paper and pencil. I prepared using copious paper notes, books, notecards. I recorded myself on an audio handheld dictaphone and listened to audio tapes in my car or on my Walkman while exercising 2/11
I took an in-person Board review course done in a hotel with lectures and practice exams. I attended with classmates in another city. The content was printed and filed in a paper binder. Practice questions from other groups were shared via print outs. 3/11
(1/9) As today is #22qAwarenessDay day, we thought it would be the perfect day to share our recently published paper on family communication about psychiatric risk in 22q. rdcu.be/cBtMU #GCChat
(2/9) We interviewed parents of children with 22q and asked them about their thoughts on/experiences of talking to their children about their chance for developing a psychiatric disorder.
(3/9) Past research has shown that parents struggle with disclosing details of their child’s own diagnosis to their child. The stigma that surrounds psychiatric disorders might make the communication process that much more challenging for parents.
It is #TransAwarenessMonth and almost #TransAwarenessWeek! 🏳️⚧️ Before advocating for gender-diverse communities, self-education is key. Resources for genetic counselors #GCchat - A 🧵
1. A great general website by @FenwayHealth with SO MANY webinars and pamphlets on LGBTQIA+ topics! Truly, start here. lgbtqiahealtheducation.org
2. UCSF has so many guidelines about general care for gender-diverse people, including gender affirmation info, cancer screening, etc. transcare.ucsf.edu/guidelines
Another stimulating #NSGC21 session, this time with the illustrious @DorothyERoberts. So glad to see @GeneticCouns embracing the anti-racism theme! As promised, here's a 🧵 of relevant resources, from my work and others. Also, I have a FacDev workshop for interested folks #GCChat
After reading Fatal Invention by @DorothyERoberts, next turn to Superior: The Return of Race Science by Angela Saini. #GCChat
For more on the use of race-correction in medical practice, read Hidden in Plain Sight — Reconsidering the Use of Race Correction in Clinical Algorithms nejm.org/doi/full/10.10… #GCChat
.@TheACMG recommends all pregnant patients and those planning a pregnancy should be offered screening for a panel of 100+ genes (autosomal recessive genes with a carrier frequency of ≥1/200 & & certain X-linked genes) go.nature.com/36NagVd #GCchat #ExpandedCarrierScreening
They specifically highlight that they DO NOT recommend offering Tier 1 (CF & SMA only) and/or Tier 2 (genes w/ ≥1/100 carrier frequency) screening, because these do not provide equitable evaluation of all racial/ethnic groups. #expandedcarrierscreening #GCchat
ACMG states: Carrier screening paradigms should be ethnic and population neutral and more inclusive of diverse populations to promote equity and inclusion. #expandedcarrierscreening #GCchat
1/11: Excited to tweet about our just published paper! @AliciaSemaka, Rolan Batallones, Caitlin Slomp, @EMM_GC, @Inglis_Angela, Marlene Moretti & @J9_Austin: parents experience of psychiatric genetic counseling (pGC) for 22q11.2DeletionSyndrome #GCChat onlinelibrary.wiley.com/doi/10.1002/jg…
2/11: We know early intervention leads to best outcomes for psychiatric conditions, yet psych issues associated with 22qDS are often inadequately addressed by health care providers nature.com/articles/gim20…, pubmed.ncbi.nlm.nih.gov/26033850/, pubmed.ncbi.nlm.nih.gov/22833231/ & services are underused
3/11: Parents often eventually learn on their own about associated mental health issues pubmed.ncbi.nlm.nih.gov/18698620/ & are very concerned about their child developing psychosis/schizophrenia, ~ 25-41% ajp.psychiatryonline.org/doi/full/10.11… compared to general population chance of 3%.
Another powerful post (if you’re not following @AwareDare please do!) - this really shows how we have quite some work to do as a profession. Extending the same empathy and compassion to each other as we do to our patients is so key… #gcchat
🧵 More reflections on this: it seems to me that we are invested in a model where we imagine that a GC cannot be a vulnerable/“imperfect” human (or indeed even just a whole complex human) AND be an effective helper of others. We hold ourselves to unachievable/undesirable ideals
Also, thinking about the history of our profession to try to understand what’s currently going on (if you’ve not read amazon.ca/Telling-Genes-… I strongly recommend it).
Genetic counseling started as something done by well-to-do, white cishet women…
Genetic counseling started as something done by well-to-do, white cishet women…
A thread. 🧵 On Monday I was told that a board who has extended accommodations to me have been really helpful and obliging in meeting my needs and I should be grateful. Accommodations are not a favour. Accommodations are a mechanism to avoid discrimination.
I am thankful that they have chosen not to discriminate. I am not disproportionately thankful because they have not disproportionately provided accommodations above and beyond the letter of the law.
I found it very hard to know if/how to respond to this microaggression. I used a lot of emotional and mental energy trying to come to a decision about if and how to discuss this with the person. I found this source helpful: nytimes.com/2020/03/03/sma….
I am incredibly honored and humbled to receive this award & thank you so much to @carrie_haverty for the nomination. Having you as a mentor, colleague & ally has meant so much.
But if I can say something else, I am also incredibly frustrated at our NSGC community #NSGC20 #GCchat
But if I can say something else, I am also incredibly frustrated at our NSGC community #NSGC20 #GCchat
This is the 20th anniv. of home DNA testing for ancestry purposes! 20 years ago this mo, @FamilyTreeDNA sent out its first test kit. The testing was v diff, but the industry (cos like @23andMe, @Ancestry and @MyHeritage) traces back to this moment 2 decades ago. #DNAtesting20
In coming wks I’ll be tweeting out the milestones of the last 20 yrs in #DNAtesting. I’m taking suggestions! Could be industry or #geneticgenealogy moments, or ones relating to yr personal #genealogy journey. Put year and tag #DNAtesting20. This week: 2000-2010.
Milestones from 20 yrs of #DNAtesting: #DNAsurprises have been uncovered since the industry's beginning. The founder of @FamilyTreeDNA told me he stumbled on the 1st before he even rolled out product, during proof of concept testing in ‘99. #genealogy Send yrs w/ #DNAtesting20
Hi all! I’m back from vacation & I’m ready to talk about GCs & genetic test ordering. A few things: this is not an official NSGC communication & I am no longer on the BOD. However, as NSGC's 2018 President, I’ve spent a lot of time on this issue & learned a lot. #GCchat
This is not solely directed at ACMG, though I wholly disagree with their stance & urge those who feel the same to contact their BOD & voice their concerns. This is a critical issue & I would like to enable educated, data-driven, respectful conversations between all involved.
This will be a long one. I'll thread all tweets & so as to not blow up inboxes, will tag everyone I mention at the end so you can find them. I'll also do my best to continue & facilitate the discussion here. But to contact NSGC, I suggest emailing them - nsgc at nsgc dot org.
I've had 24 hours to think about @TheACMG's decision NOT to support #genetic counselors bill HR3235, The Access to Genetic Counseling Act. @TheACMG does not support genetic counselors right to order genetic testing. 1/5
@TheACMG I am a certified genetic counselor with >25 years experience in the field. I've been the senior author on 4 published papers re: 'errors in genetic testing', including errors due to the wrong test being ordered. 2/5 #gcchat
@TheACMG Errors documented have resulted in #patients having prophylactic surgeries they did not need, being diagnosed w late-stage cancers, and huge waste of #healthcare dollars. All of this because a #genetics professional was not involved in the ordering process. 3/5
Thanksgiving is coming up, so here’s my #thread on HOW TO TALK ABOUT DIRECT-TO-CONSUMER (DTC) DNA TESTS WITH YOUR LOVED ONES 🦃🧬 #GCchat
* This thread is NOT medical advice! Ask your health providers about medical concerns! Also, I’m referring to folks 18+ since personally I don’t think parents/guardians should order DTC testing on minors. That could be a whole thread on its own, so I’m leaving kids out of this.
1) I don’t think telling people not to do things is the answer. I believe people should have access to the info they want about their health & DNA (Though informed choices are key! And I wish there was better access for more people so that DTC didn’t seem like the only option)
1/n: So, we just finished reviewing abstracts for NSGC's 2018 Annual Ed Conference & I really enjoyed it! I loved some of the projects—for others I had constructive, diplomatic feedback. Here are some good & bad things that might be helpful to other researchers:
2/n: First, let’s start with the things that I didn’t like: 1. Bad intros. Omit clunky declarative opening lines. When in doubt, type “Purpose:” and go from there. Good intros don’t receive extra points, but you will avoid the dreaded sigh through grinding teeth.
3/n: Intro infatuation. Intros shouldn't be the longest part. Try color-coding each section or a word-count and make a bar graph to see relative length. It's like filling up on breadsticks at a subpar Italian chain restaurant when I came for the osso buco.
