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turnaray.bsky.social @turnaray.bsky.social · Jul 2

NEW CASE from @precmedonline.bsky.social & @mygenecounsel.bsky.social A maternal-fetal medicine doc offered a pregnant woman a 2nd non-invasive prenatal test after the 1st one showed an abnormal finding in chromosome 18. Find out why this is a bad idea www.precisionmedicineonline.com/inherited-di...

Genetic Testing Challenges in Precision Medicine: After Abnormal NIPT, Retest Causes Confusion

After an abnormal NIPT finding in a pregnant woman, a maternal-fetal medicine doctor orders a second NIPT, against recommendations.

drupal-prod.precisionmedicineonline.com

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turnaray.bsky.social @turnaray.bsky.social · Apr 21

In this @genomeweb.bsky.social article, I wrote about a small group at the CDC that had an outsized impact on the integration of genomics into public health and how access to evidence-based testing may be impacted in its absence. www.genomeweb.com/cancer/conce... @muinjkhoury.bsky.social

Concerns Rise Over Potential End of Public Health Genomics in US

This small branch played a big role in advancing evidence-based genetic testing, and its loss diminishes US leadership in public health, say supporters.

drupal.prod.genomeweb.com

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turnaray.bsky.social @turnaray.bsky.social · Apr 7

@precmedonline.bsky.social is hosting a molecular tumor board at the #ASCO meeting in Chicago on May 30! Our MTB panelists will discuss cases where they've used MRD for monitoring; made treatment decisions based on HER2-low or -ultralow results; and more.
Sign up: www.eventbrite.com/e/pioneering...

Pioneering Oncology through Molecular Tumor Boards

Join our in-person breakfast session during ASCO to explore real-world applications of genomic profiling in cancer care!

www.eventbrite.com

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Charlie Savage @charliesavage.bsky.social · Feb 13

The Trump admin says ICE has custody of migrants sent to Guantanamo, but it's DOD guards in Camp 6, a war-on-terror prison. It won't say who is being held incommunicado there, but we are publishing a list of 53 men in Camp 6.
w/ @carolrosenbergnyt.bsky.social
www.nytimes.com/2025/02/12/u...

Some Migrants Sent by Trump to Guantánamo Are Being Held by Military Guards

The Times has obtained a list of 53 Venezuelan men the Trump administration has put in a wartime prison built to hold Al Qaeda suspects.

www.nytimes.com

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Becky with the good scare 🎃👻💀🕸️ @rebeccaclewis.bsky.social · Feb 13

New, longer and stronger statement from Gov. Kathy Hochul on the lawsuit filed against her and other NY leaders over the Green Light Law. "There's no way I'm letting federal agents, or Elon Musk's shadowy DOGE operation, get unfettered access to the personal data of any New Yorker in the DMV system"

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Joshua J. Friedman @joshuajfriedman.com · Feb 12

For those reading about the Trump administration clawing back $80M given to NYC to house migrants, here's the Trump DOJ telling a federal judge last night that FEMA planned to withhold funding to its shelters program

Joshua J. Friedman @joshuajfriedman.com · Feb 12

NEW: The Trump administration asks a federal judge for emergency permission to suspend funding to the FEMA shelter program that Elon Musk posted lies about storage.courtlistener.com/recap/gov.us...

DEFENDANTS' EMERGENCY MOTION FOR A RULING BY 11 A.M. ON FEBRUARY 12, 2025, FOR PERMISSION TO CONTINUE WITHHOLDING FEMA AND OTHER FUNDING
On January 31, 2025, this Court entered a Temporary Restraining Order
(TRO) that provided certain relief against the temporary pause of funding announced in OMB Memorandum M-25-13, but still allowed Defendants to pause funding "on the basis of the applicable authorizing statutes, regulations, and terms," provided they "comply with all notice and procedural requirements in the award, agreement, or other instrument relating to decisions to stop, delay, or
otherwise withhold federal financial assistance programs." ECF No. 50 at 12.

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turnaray.bsky.social @turnaray.bsky.social · Feb 12

What do the NIH indirect rate cuts portend for precision medicine? The whole @precmedonline.bsky.social reported on this. www.precisionmedicineonline.com/precision-on...
Jessica Kim Cohen, @cathshaffer.bsky.social, Alison Kanski, @ciarzc.bsky.social

Precision Medicine Supporters Worry About NIH Indirect Rate Cut's Impact on Advances, Workforce

Researchers have been "making great inroads" in precision medicine, and a 15 percent cap on indirect costs could quash the momentum, experts worry.

drupal.prod.precisionmedicineonline.com

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Andrea Anderson @andreaanderson.bsky.social · Feb 12

@turnaray.bsky.social’s team took a deep dive into potential effects of NIH funding changes on the development of new precision medicine approaches.

Precision Medicine Supporters Worry About NIH Indirect Rate Cut's Impact on Advances, Workforce

Researchers have been "making great inroads" in precision medicine, and a 15 percent cap on indirect costs could quash the momentum, experts worry.

www.precisionmedicineonline.com

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turnaray.bsky.social @turnaray.bsky.social · Feb 10

A Republican legislator in Idaho wants to repeal the state's licensure law for genetic counselors. The aim seems to be gov't deregulation, but genetic counselors say deregulating their profession could harm patients. Here's the story on @genomeweb.bsky.social www.genomeweb.com/cancer/genet...

Genetic Counselors in Idaho Push Back Against Delicensing Bill

Conservative supporters of government deregulation want to do away with state-imposed licensing requirements, a move genetic counselors say will harm patients.

www.genomeweb.com

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turnaray.bsky.social @turnaray.bsky.social · Feb 5

One idea in a long list of cost-cutting proposals that Republican lawmakers are circulating as they mull budget reconciliation legislation is to "eliminate" tax deductions for giving to healthcare nonprofits, including patient advocacy groups. Article: www.precisionmedicineonline.com/precision-on...

Patient Advocates Raise Alarm Over Republican Proposal to Nix Healthcare Charity Tax Deductions

The proposal, purported to save $83 billion over a decade, is a "dagger in the heart of all patient advocacy nonprofits," said the head of a cancer patient support group.

www.precisionmedicineonline.com

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My Gene Counsel @mygenecounsel.bsky.social · Feb 5

The latest from @ellenmatloff.bsky.social, @turnaray.bsky.social, and GenomeWeb focuses on a missed opportunity for cascade testing and the diagnosis that followed: hubs.li/Q034VD6F0 #genechat #precisionmedicine

Genetic Testing Challenges in Precision Medicine: Delayed Cascade Testing Due to Unclear Counseling

A patient found to carry a BRCA1 pathogenic variant is not referred to a certified genetic counselor in her health system.

hubs.li

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turnaray.bsky.social @turnaray.bsky.social · Jan 23

Last week, the FDA and American Association for Cancer Research held a workshop to discuss DPYD testing. Oncologists put forth a lot of reasons against routine testing; patient advocates countered them on every point. Here's my article for @genomeweb.bsky.social www.genomeweb.com/cancer/aacr-...

At AACR-FDA Workshop, Oncologists Grapple With Balancing Risks, Benefits of DPYD Testing

Doctors and patient advocates supporting pretreatment testing at times challenged FDA and other experts who aren't swayed by available evidence.

www.genomeweb.com

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Kathryn A Phillips PhD @kathrynp-phd.bsky.social · Jan 23

Worth reading. The Real Reasons Drug Prices Are So High | Health Affairs www.healthaffairs.org/content/fore...

The Real Reasons Drug Prices Are So High | Health Affairs Forefront

Key policies introduced over the past 45 years have brought new research organizations and investors into the pharmaceutical R&D process, increasing industry’s market power relative to that of private...

www.healthaffairs.org

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turnaray.bsky.social @turnaray.bsky.social · Jan 16

Scoop --> Larry Milesky died horrifically from a chemotherapy overdose in May 2023 at Mass General Hospital. His wife was determined to change policies at Mass General Brigham to reduce the risk of this happening to others. www.genomeweb.com/cancer/mass-...

Mass General Brigham Becomes Latest US Health System to Adopt Pretreatment DPYD Testing

The change in policy at the health system follows the death of a DPD deficient patient and comes during a period of intense competition among Boston hospitals.

www.genomeweb.com

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Andrea Anderson @andreaanderson.bsky.social · Jan 2

From Wright Thompson’s book, The Barn.

Shine the light. #booksky

Page from the Wright Thompson book, The Barn, with the following text highlighted: “the tragedy of humankind isn’t that sometimes a few depraved individuals do what the rest of us could never do. It’s that the rest of us hide those hateful things from view, never learning the lesson that hate grows stronger and more resistant when it’s pushed underground.”

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turnaray.bsky.social @turnaray.bsky.social · Dec 30

Here are the top 10 hits reported by the Precision Medicine Online (@precmedonline.bsky.social) team in 2024. Thanks for your excellent work @chopkinslegaspi.bsky.social, @cathshaffer.bsky.social, Alison Kanski, and Jessica Kim Cohen.

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My Gene Counsel @mygenecounsel.bsky.social · Dec 23

Many non-genetics providers are unsure of what test is best to order. That's where genetic counselors come in. Read a case example from @genomeweb.bsky.social @turnaray.bsky.social in collaboration with mGC CEO @ellenmatloff.bsky.social: hubs.li/Q030rrpl0 #genechat #precisionmedicine

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turnaray.bsky.social @turnaray.bsky.social · Dec 18

The night sky from Death Valley I'll remember forever.

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turnaray.bsky.social @turnaray.bsky.social · Dec 13

Just felt a #temblor! #santiago

Chile Quake Alert - Chile Sismos @chile-sismos.bsky.social · Dec 13

#Chile #sismo M6.1 | Curicó, Maule, Chile | hace 4m | 13 dic 2024 20:38 (Argentina Standard Time)
¿Lo sentiste? ¡Envía un informe!
#very_strong #M2+ #M3+ #M4+ #M5+ #M6+ #Chile #Maule

Terremoto muy fuerte magnitud 6.1 a 118 km de profundidad

¡Vea información detallada sobre el terremoto, lea informes de usuarios y envíe el suyo si lo sintió!

www.volcanodiscovery.com

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Caroline Hopkins Legaspi @chopkinslegaspi.bsky.social · Dec 13

ICYMI, here's all of @cathshaffer.bsky.social, @turnaray.bsky.social, Jessica Kim Cohen and my #hematology coverage from @ash-hematology.bsky.social #ASH24: www.precisionmedicineonline.com/organization...

ASH Precision Oncology News | Precision Medicine Online

News and reporting on ASH from Precision Medicine Online Precision Oncology

www.precisionmedicineonline.com

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turnaray.bsky.social @turnaray.bsky.social · Dec 12

The latest case in Precision Medicine Online and My Gene Counsel's #GeneticTestingChallenges series: www.precisionmedicineonline.com/neurological...

Genetic Testing Challenges in Precision Medicine: Ataxia Patient Tested for Cardiomyopathy Genes

A neurologist orders the wrong genetic test for a patient experiencing peripheral neuropathy and doesn't realize it even upon seeing the report.

www.precisionmedicineonline.com

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turnaray.bsky.social @turnaray.bsky.social · Dec 12

a man in a white hooded sweatshirt is standing next to a boy in a red hooded jacket .

ALT: a man in a white hooded sweatshirt is standing next to a boy in a red hooded jacket .

media.tenor.com

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turnaray.bsky.social @turnaray.bsky.social · Dec 12

A case is making its way through the Colorado courts, in which the parents of twins -- a boy with Duchenne and a girl who is a DMD mutation carrier -- are suing Children's Hospital Colorado and GeneDx for alleged negligent genetic counseling and testing. My article: www.genomeweb.com/molecular-di...

Appeals Court Finds Negligence Claims Against Hospital, GeneDx Valid Under Colorado Statute

Parents are suing the defendants for negligent genetic counseling and testing that they allege precluded their ability to avoid having children with Duchenne.

drupal.prod.genomeweb.com

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My Gene Counsel @mygenecounsel.bsky.social · Dec 3

"This case is concerning because the neurologist not only ordered the wrong test but didn't recognize the error even after seeing a report...entirely unrelated to ataxia." The latest in GenomeWeb's Genetic Testing Challenges series with @ellenmatloff.bsky.social @turnaray.bsky.social: bit.ly/3OzvtIf

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Debbie Kennett 🧬🌳 @debbiekennett.bsky.social · Nov 21

On Monday I will be in Barcelona for the Eugin-UPF Symposium. I will be talking about direct to consumer DNA testing and how it has ended donor anonymity. eventum.upf.edu/122238/progr...

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