Kayte Spector-Bagdady

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Kayte Spector-Bagdady

Kayte Spector-Bagdady

@KayteSB

Law & ethics @umichmedicine (view own) • Director @MichiganBioethics • AE @Bioethics_net • Former AD @bioethicsgov for @BarackObama • Big data/little privacy

Ann Arbor, MI Beigetreten Mayıs 2013
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Michigan News
Michigan News@UMichiganNews·
“Many of the warnings from the media and attorneys general are focused on genetic information because it is unique to only one person. But direct-to-consumer genetic testing companies also retain a massive amount of personal information from the surveys consumers are asked to complete,” said @KayteSB, associate professor of obstetrics and gynecology with @UMichMedSchool, via @ConversationUS: theconversation.com/23andme-is-pot…
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Kayte Spector-Bagdady
Kayte Spector-Bagdady@KayteSB·
As 23andMe files for bankruptcy and Wojcicki steps down as CEO (so she can bid) Anya Prince & my recent JAMA piece discusses what can - and should - happen to the over 1 million private genomes it has collected
JAMA@JAMA_current

@KayteSB "When people’s health data are commercialized—whether those data were originally generated in the clinical, research, or commercial context—what guardrails exist for how those data can be used, shared, or marketed in the future?" Read the full Viewpoint: ja.ma/40uGL7q

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Anne Wojcicki
Anne Wojcicki@annewoj23·
The 23andMe Special Committee released news today indicating their plan to take the company through the Chapter 11 process.   While I am disappointed that we have come to this conclusion and my bid was rejected, I am supportive of the company and I intend to be a bidder.   I have resigned as CEO of the company so I can be in the best position to pursue the company as an independent bidder.  Nineteen years ago, when I co-founded 23andMe, the direct to consumer industry did not exist and most people had no idea why they would ever want to see their genome.   So much has changed.   There is now a thriving direct to consumer industry and over 15 million people are now 23andMe customers.   These customers are continuing to learn about their family relationships and how to optimize their health thanks to the incredible team of individuals at 23andMe who innovate and help customers gain insights from their genetic information. What made so many of our innovations possible were the 85% of our customers who opted in to research.  Thanks to them they have empowered an incredible platform for discovery.  You enabled our pursuit into novel drug discovery and our 50 programs with GSK.   In addition, over 250 publications have come out because of you and we have meaningfully impacted the research world.   Thank you. We have had many successes but I equally take accountability for the challenges we have today. There is no doubt that the challenges faced by 23andMe through an evolving business model have been real, but my belief in the company and its future is unwavering.  Consumers are rising up and asking for more control over their health and want greater knowledge about how to be healthy and why they may have health issues. We fought for consumers to have direct access to their information and for them to have choice and transparency with respect to their personal data.   As I think about the future, I will continue to tirelessly advocate for customers to have choice and transparency with respect to their personal data, regardless of platform. Since 2006, we have built an incredible consumer brand with one of the world's largest and most diverse genetic communities. Our foundation was the trust and respect of our customers, and they were always the guiding light on how we made decisions. If I am fortunate enough to secure the company’s assets through the restructuring process, I remain committed to our long-term vision of being a global leader in genetics and establishing genetics as a fundamental part of healthcare ecosystems worldwide.
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NY AG James
NY AG James@NewYorkStateAG·
This morning, we won a court order blocking Elon Musk, the world’s richest man, from accessing Americans’ private data. Musk and his DOGE employees must destroy all records they've obtained. I've said it before, and I'll say it again: no one is above the law.
NY AG James@NewYorkStateAG

We're suing over the free rein Donald Trump gave Elon Musk and DOGE to access Americans’ private information. Musk and DOGE want to use this information to cut vital services that Americans rely on — from health care to education. This is unacceptable and illegal.

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JAMA
JAMA@JAMA_current·
Many who undergo direct-to-consumer genetic testing don’t realize that their data are being licensed to pharmaceutical and biotech companies. JAMA Viewpoint authors @KayteSB and Anya E. R. Prince discuss this gap between consumer expectations and what is being done.
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Kayte Spector-Bagdady
Kayte Spector-Bagdady@KayteSB·
Had an amazing time catching up with friends and colleagues including the wonderful ⁦@jzayanian⁩ at the ⁦@UM_IHPI⁩ coffee hour ☕️ (Look at that foam! Such art!! 〽️) (guest appearance by ⁦⁦@JAMA_current⁩ )
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Kayte Spector-Bagdady@KayteSB·
So fun to get to work with Prof. Prince and @JAMA_current on this! They didn't have to cut me saying "I told you so" from the video because I didn't say it. But, 9 years ago... sciencedirect.com/science/articl…
JAMA@JAMA_current

Many who undergo direct-to-consumer genetic testing don’t realize that their data are being licensed to pharmaceutical and biotech companies. JAMA Viewpoint authors @KayteSB and Anya E. R. Prince discuss this gap between consumer expectations and what is being done.

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JAMA
JAMA@JAMA_current·
Viewpoint highlights 3 interdigitating themes—vulnerability, inclusivity, and global justice—central to the 2024 revision of the Declaration of Helsinki. ja.ma/3Wg5BoN
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JAMA
JAMA@JAMA_current·
This Editorial from @HollyLynchez and Daniel Kramer highlights the need for regulatory clarity to support ethical research in clinical care settings. ja.ma/3Ccu9YY
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JAMA
JAMA@JAMA_current·
Viewpoint: Nicole Huberfeld and @MichaelRUlrich discuss the US Supreme Court's decision in United States v Skrmetti, which will determine if Tennessee’s ban on gender-affirming care for minors violates the Equal Protection Clause. ja.ma/3BQSWC0
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Santa Ono
Santa Ono@SantaJOno·
Thank you to Brigadier General Carol Ann Fausone and Jim Fausone for bringing UM and VA leaders together to discuss our partnership in veterans health. I appreciate their dedication and devotion to our veterans.  I was so impressed with the Lt. Colonel Charles S. Kettles VA Medical Center – a top five facility for our America’s veterans. @DeptVetAffairs @umichmedicine
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Kayte Spector-Bagdady@KayteSB·
Why put the duty to report medical conditions associated with impaired driving on doctors and disincentivize care and honest communication? Wouldn’t it make more sense to start requiring a repeating driving test at a certain age? nytimes.com/2024/11/04/opi… via @NYTOpinion
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Tatiana Prowell, MD
Tatiana Prowell, MD@tmprowell·
I was a dr before the Affordable Care Act. And people w/ cancer did hit lifetime caps & had further treatment denied by insurers. They were dropped from plans, declared bankruptcy, & died. We are NEVER EVER going back to that. #PresidentialDebate2024 #MedTwitter
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Alexandria Ocasio-Cortez
This is real. Your vote is anonymous and confidential. Who you voted for is YOUR secret. No one can know unless you tell them. When I do instagram Q&As (where people can ask me questions privately and have them publicly answered), this comes up a lot more than you’d think.
Sahil Kapur@sahilkapur

A woman at Obama’s Pittsburgh rally told me she and her friends, when they go to rural PA, “leave post-it notes in the bathroom saying: NOBODY WILL KNOW WHO YOU VOTED FOR.” Why? She said women in red areas feel stigmatized if they oppose him & don’t all know their vote is private

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ProPublica
ProPublica@propublica·
New: Josseli Barnica is one of at least two pregnant Texas women who died after doctors delayed emergency care. She'd told her husband that the medical team said it couldn't act until the fetal heartbeat stopped. propub.li/4f2ILsh
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