Pediatric bioethicist, heme/onc doc, researcher, and foodie. Tweets and ideas are my own.
Memphis, TN
Joined July 2011
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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
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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Liza-Marie (Liza) Johnson retweeted
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. bit.ly/3zq5E5L @AkshaySharmaMD @lijohnson2000 @janbra1
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/doi/…
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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. mdpi.com/1980402 #mdpichildren via @MDPIOpenAccess
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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. nyti.ms/3DczgVH @Erika_Check @NYTimes
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
#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! onlinelibrary.wiley.com/doi/… How do you think outside the box to facilitate quality consent?
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
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 talent.stjude.org/careers/jo…
#thisishowwehospitalist #stjudehospitalistprogram
Liza-Marie (Liza) Johnson retweeted
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/news/using-famil…
💯!! 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: bioethicsdirectors.net/wp-co… #AbortionIsHealthcare
Liza-Marie (Liza) Johnson retweeted
ALT The Gun Lobby's interpretation of the Second Amendment is one fo the greatest pieces of fraud, I repeat the word fraud, on the American People by special interest groups that i have ever seen in my lifetime - 1990 PBS Chief Justice Warren Burger
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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Liza-Marie (Liza) Johnson retweeted
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 🙏🏽 – at Memphis, TN
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
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/eprint/IHBCP…
