Liza-Marie (Liza) Johnson
@lijohnson2000
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Pediatric bioethicist, heme/onc doc, researcher, and foodie. Tweets and ideas are my own.
Memphis, TN
Joined July 2011
Working with @AkshaySharmaMD to bring together experts and #sicklecelldisease patient stakeholders. #scdgene seeks to inform clinical trial communication around novel clinical trials, such as #geneediting. @ELSIhub for the funding #elsi #genomics #SCDAwareness . @StJudeResearch
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Have a $$$ @MySamsonite bag that broke before first use. Had to fly with it because store closed & could not return. @SamsoniteUSA was helping but has now #ghosted me when I replied to their email with my replacement choice. Terrible customer service, just buy @tumitravel
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Few #SickleCell disease patients feel knowledgeable about #GeneTherapy, and most feel neutral about its safety. Culturally appropriate patient-centered education is urgently needed as #GeneTx proceeds to the clinic. https://t.co/KVUdgN4hY8
@AkshaySharmaMD @lijohnson2000 @janbra1
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Bi-directional communication with patients involves understanding their "why". New paper on attitudes towards #Covid19 vaccine among pediatric families with #SCD. #sicklecell #bioethics #patientvoice #askthem
onlinelibrary.wiley.com
Objective To evaluate attitudes toward vaccination and vaccine uptake regarding coronavirus disease 2019 (COVID-19) among pediatric patients with sickle cell disease (SCD) and their caregivers. Pr...
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Palliative Sedation Therapy (PST) a tool for symptom management in children with refractory suffering at the end of life. Updates to our PST algorithm and clinical practice led by colleague Dr. Andrea Cuviello. https://t.co/DX1ktIo5Vo
#mdpichildren via @MDPIOpenAccess
mdpi.com
Palliative sedation therapy (PST) is an important clinical intervention for pediatric patients with refractory symptoms and suffering during the end-of-life (EOL) period. Variations in PST implemen...
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Thinking a lot about personalized N-of-few Investigational Plans lately. How can we honor principles of #researchethics to gain knowledge and honor our duty to protect patients who are participants in investigational interventions.
After an experimental epilepsy drug caused acute side effects in 2 non-St. Jude patients, physician-ethicist @lijohnson2000 says researchers need to share data so other clinicians can make future treatment safer. https://t.co/FQAkECACoC
@Erika_Check @NYTimes
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Always a privilege to speak at national meetings! @AmerSocBioHum annual meeting, today on the Ethical implications of N-of-Few interventions. Fantastic co-panelists and great Q&A with the audience!
#asbh22 great panel w @ABatemanHouse @john_massarelli #rafaelescondon #LizaMarieJohnson individualized antisense oligonucleotides for n-of-few genetic conditions: ethical challenges
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#informedconsent should be more a thick stack of papers & #medicaljargon. What about multimodal approaches? #researchethics #decisionmaking. Thanks Pediatric Blood and Cancer to let me opine! https://t.co/3GDwo1nwtm How do you think outside the box to facilitate quality consent?
onlinelibrary.wiley.com
Click on the article title to read more.
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Thank you to the @NHLBI for funding #PedsGeneRx. Partnering with families of kids with #sicklecelldisease and other #pediatric #raredisease to develop patient-centered #genethreapy education & #clinicaltrials. DM me for more information about upcoming focus groups. #ethics
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Looking for a nocturnist (or hybrid) to join our team. Open to physicians who are BE/BC in peds, med-peds, or peds EM. @StJudeResearch
https://t.co/JNq5CmGgas
#thisishowwehospitalist #stjudehospitalistprogram
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Thanks to @ELSIhub for highlighting our work on why #SickleCell stakeholders' voices are so important in the conversation about novel #GeneTherapies, thanks to @bioethicsjosie for mentoring @lijohnson2000 and me
elsihub.org
Sickle cell disease (SCD), characterized by severe pain crisis and progressive organ damage as well as early death, is one of the most common inherited blood disorders in the world. However, since...
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💯!! Also, we need to #trust our patients. You can be on one of these Rx and still have pain crisis. #sicklecell
Pain medications are certainly an important part of #SickleCell care but it is essential that ALL patients also receive at least one disease modifying 💊 to prevent other inevitable complications We have a growing # of options Hydroxyurea, Oxbryta, Adakveo, transfusions
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Official guidance from Association of Bioethics Program Directors on obligations in the post Dobbs era. Read it here: https://t.co/2RBsj9FMgm
#AbortionIsHealthcare
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1/ Tip, always take a photo of the valet tag #. I actually joked with the guy as I took the 📸,”it’s not like you’re going to lose this, but just in case” 🫣
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Landed in #DEN where 20+ co-passengers discovered that @united crew @flymemphis FORGOT to load all the gate checked bags onto the ✈️. I mean that guy scanning the valet bag tags & the guy on the ground waiting had #onejob. Huge inconvenience, #travelnightmares. 🤬😤
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Had an amazing 2 days brainstorming with #SickleCell warriors & caregivers. We are developing educational content for SCD #GeneTherapy & #BMTsm for patients & providers w/ @BoosterShotCmx. Thanks to @ELSIhub + @CRISPRTX for funding, @lijohnson2000 for co-leading this effort 🙏🏽
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Great 2 days with #SCDWarriors brainstorming content for our tool on gene therapy and BMT for #scd. Thanks to the whole team, but especially @ELSIhub for funding part of this collaboration and @AkshaySharmaMD for co-leading these past 2 years! @StJudeResearch
The #scdgene study group chatting w/ @BoosterShotCmx abt how to approach the patient/caregiver info resource on gene therapy vs BMT, following the productive focus group discussions. Co-develop is truly in progress here in #chicago! @StJudeResearch
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Nearly 1 in 4 American women will have an abortion by age 45. Many are for medical/fetal complications. The sweeping laws coming if Roe is overturned will hurt women.
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New paper from our #genomesforkids project @StJudeResearch. Family expectations about #genomic information and future results. Managing Pandora’s Box: Familial Expectations around the Return of (Future) Germline Results
tandfonline.com
Pediatric oncology patients are increasingly being offered germline testing to diagnose underlying cancer predispositions. Meanwhile, as understanding of variant pathogenicity evolves, planned rean...
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