Kayte Spector-Bagdady

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

[Kayte Spector-Bagdady @KayteSB]

As someone who has been studying this for over a decade, my take on what 23andMe customers should really be worried about:

https://t.co/ylcFXQEieK

[U-M IHPI @UM_IHPI]

Featuring our member @KayteSB …

[Verasight @verasight_data]

A new study by @ana_bracic, @KayteSB, Sophie Towle, Rina Zhang, @CAJamesMD, and @WNicholsonPrice at @michiganstateu, published in @JAMANetworkOpen, uses Verasight survey data from 3,000 U.S. adults to examine what drives patient trust in AI-assisted diagnosis.

[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: https://t.co/S1RalqERa1

[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: https://t.co/bH0FLPuJCe

[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.

[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.

[Kayte Spector-Bagdady @KayteSB]

@JAMA_current 23andMe's new research company just dropped: https://t.co/YDr2PN7bog

[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 )

[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...

https://t.co/ETcIbUGBr5

[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.

[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.

[JAMA @JAMA_current]

Viewpoint highlights 3 interdigitating themes—vulnerability, inclusivity, and global justice—central to the 2024 revision of the Declaration of Helsinki.

https://t.co/WvGNMdVI8i

[JAMA @JAMA_current]

This Editorial from @HollyLynchez and Daniel Kramer highlights the need for regulatory clarity to support ethical research in clinical care settings.

https://t.co/GxJPyZMkuB

[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.

https://t.co/ekd1UjlsmD

[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

[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?

https://t.co/GoSX3ZoLvm via @NYTOpinion

[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

[Kayte Spector-Bagdady @KayteSB]

*so far and that we know of

[ProPublica @propublica]

New: It took three ER visits and 20 hours before a hospital admitted Nevaeh Crain, 18, as her condition worsened. Doctors insisted on two ultrasounds to confirm “fetal demise.” She's one of at least two Texas women who died under the state's abortion ban. https://t.co/NiNtKD6Jo9

[Alexandria Ocasio-Cortez @AOC]

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.

[MichiganAI @michigan_AI]

#AI has the potential to aid in leveraging patient data to make clinical care decisions, but there are also risks.

Jenna Wiens, @KayteSB & @BhramarBioStat focus on the role of genetics and AI in precision #health, including in prevention and primary care:
https://t.co/1IZ9vxwxJW