Would you consent to your DNA data being shared with other companies? The rise and fall of 23andMe...

[MickVanWinkle]

We do our dogs for DNA since we tend to rescue and are curious.  Has actually paid off for the genetic predispositions shared with the vet.  On the other hand, my wife had a ‘mutt reveal’ party I was forced to partake.

I personally am split on the human data aspect.  As a healthcare data guy, this type of data presents endless opportunity.  That being said, I typically elect to restrict what info I provide, having seen firsthand how the best of security measures break down. 

[Namisgr11]

As long as any data the company collected from me was de-identified (didn't have my name or other identifier like social security number) tied to it, then I don't see what the problem would be.

But if the company has experienced a data breach and my DNA sample data are no longer de-identified, then I'd not consent to having a sample done.  To date, I've not ordered a DNA ancestry test, and am not interested in one.  

As for screening for DNA modifications known to be associated with the risk of contracting human diseases, I'd prefer to have those done on an as-needed basis by a company with FDA regulation and their approval to conduct such work.  For instance, I'd happily agree to get the new blood screen for early detection of up to 50 different types of cancer developed by Grail and known as the Galleri test, whose cost is now covered in the US by Medicare.

[wjs]

My mother was adopted (no known information on her parents) and not a lot from my fathers side - no cousins, nothing. The idea of knowing a little more is appealing. The idea of giving that kind of information to a company, for profit or not, no chance.

[Squarehead]

I had my DNA done by another company and the result was way off from what I expected. But with all those distant relatives I could fill a football stadium.

[chasy]

Anne Wojcicki is seeking to take her DNA-testing company 23andMe private after three years in public markets that saw the once-hot company’s valuation collapse from a high of $6 billion.

Her intentions were revealed in a public filing late Wednesday, which stated that she is working with advisers to help craft a potential deal and intends to speak with potential partners and financing sources. The filing said she would oppose any other buyer taking over the company. She holds 49.99% voting power in the company, which would make it all but impossible for anyone else to buy it.

News of Wojcicki’s plan drove 23andMe stock up 40% to $0.50 per share in early trading Thursday. They had closed Wednesday at $0.36, a record low that translated to a market capitalization of about $200 million. 23andMe had more than that amount of cash in the bank at the end of its last reported quarter. At the lower share price the company’s enterprise value was negative.

Wojcicki declined to comment.

The cratering of its stock reflects the many challenges facing its business. Its DNA tests aren’t as popular as they once were and lose money. 23andMe has tried to create a recurring revenue stream from its tests by offering a subscription product, but that has fallen far short of the company’s sales goals since customers only need to take its test once.

Wojcicki pivoted the company into prescription drug development, hoping to use its massive DNA database to discover new pharmaceuticals. But drug discovery is a cash-hungry business in which prospects can take a decade to pay off. The company has enough cash to last until 2025 at its current rate of spending. It has potential drug candidates in the pipeline, and taking the company private while securing additional financing could give it more leeway to get them to market.

An effort to offer medical care has also sputtered as the company has yet to fully integrate the telehealth company it acquired that was meant to anchor that service.

Wojcicki co-founded the company in 2006. She took over as sole chief executive in 2009 after pushing out her co-founder and has seen the company through other challenges, including a run-in with the Food and Drug Administration in 2013. The agency halted sales of its health test, citing a risk of false reports but later cleared them after the company spent millions validating its health reports.

Nasdaq last year threatened to delist the company’s shares.

[Puros Y Vino]

This panned out like I thought it would.  The data would be sold. It's very valuable and IMO dangerous. This data will not be used for the betterment of the human race. Only for the betterment of profits for the medical and pharmaceutical establishment.  

If I want to find out about my history, I'll stick to speaking to my living relatives. 

[ChanceSchmerr]

On 2/19/2024 at 3:57 AM, MrBirdman said:

 It’s the premise of the excellent movie Gattaca. 

Came here to say the same. Brilliant film, well ahead of its time.

Haven't used such services, and I have such low trust in safeguards preventing data breaches and unstated data usage that I'd never volunteer to use them even if paid to do so. 

I know who I am (I think). Getting a genetic breakdown won't change that any. 

[Hammer Smokin']

9 hours ago, Puros Y Vino said:

This panned out like I thought it would.  The data would be sold. It's very valuable and IMO dangerous. This data will not be used for the betterment of the human race. Only for the betterment of profits for the medical and pharmaceutical establishment.  

If I want to find out about my history, I'll stick to speaking to my living relatives. 

While I don't disagree with you, if the data is used for medical establishment, even profit driven, it could still benefit society and the human race. That is a big "if", but I also understand profits. There is great interest in using the data to establish new medications.....not really to better human race, but to make profit. 

The bettering of the human race is just a positive side effect. 

[SpecialK]

This is also being used in criminal cases finding people and or they're relatives and then going from there. The University of Idaho Murders (4 slain in a knife attack) was solved using genetic information.

[Chibearsv]

8 hours ago, SpecialK said:

This is also being used in criminal cases finding people and or they're relatives and then going from there. The University of Idaho Murders (4 slain in a knife attack) was solved using genetic information.

Was it solved with DNA information or confirmed with DNA information?  If solved, how did the suspects DNA end up in a database that investigators could reference?  

[joeypots]

8 hours ago, SpecialK said:

This is also being used in criminal cases finding people and or they're relatives and then going from there. The University of Idaho Murders (4 slain in a knife attack) was solved using genetic information.

There was a murder about 8 miles from my home a few years ago. The police waited at the post office, there's little to no delivery here, and asked citizens to let them swab for DNA. I’ve always been glad I’ve resisted the urge to get the test.  "Ahh, I think I’ll pass on that one, Officer."

[Puros Y Vino]

7 hours ago, joeypots said:

There was a murder about 8 miles from my home a few years ago. The police waited at the post office, there's little to no delivery here, and asked citizens to let them swab for DNA. I’ve always been glad I’ve resisted the urge to get the test.  "Ahh, I think I’ll pass on that one, Officer."

Yikes. Give you the swab test, grab one of your hairs from your jacket when you're not looking, if hair sample matches DNA swab:case closed the next day!!!  😬

[Arabian]

Data is the new oil, I did mine out of curiosity. 

[SpecialK]

7 hours ago, Chibearsv said:

Was it solved with DNA information or confirmed with DNA information?  If solved, how did the suspects DNA end up in a database that investigators could reference?  

I think they found  the suspect's father through the DNA chain...and worked down from there.

 

6 hours ago, SpecialK said:

I think they found  the suspect's father through the DNA chain..  and worked down from there..

https://www.nbcnews.com/news/crime-courts/genetic-genealogy-used-link-bryan-kohberger-suspect-idaho-slayings-cri-rcna90344

 

Use of genetic genealogy

Investigators first submitted DNA from the knife sheath — found facedown on a bed next to the bodies of Mogen and Goncalves, and partially under Mogen's body and the comforter — to the FBI database CODIS, which tracks DNA profiles of people who have been arrested or convicted, according to the filing. When that didn't turn up a match, investigators turned to genetic genealogy, commissioning a private lab to build a DNA profile that could be used to search for relatives, the filing states.

 

The FBI then took over and uploaded the DNA profile "to one or more publicly available genetic genealogy services to identify possible family members of the suspect based on shared genetic data," the filing states. Investigators then built a family tree of hundreds of relatives "using the same tools and methods used by members of the public who wish to learn more about their ancestors," the filing states, citing social media, birth and death certificates and user-submitted information as examples. FBI investigators then sent local law enforcement a tip to investigate Kohberger.

[Chibearsv]

6 hours ago, SpecialK said:

https://www.nbcnews.com/news/crime-courts/genetic-genealogy-used-link-bryan-kohberger-suspect-idaho-slayings-cri-rcna90344

 

Use of genetic genealogy

Investigators first submitted DNA from the knife sheath — found facedown on a bed next to the bodies of Mogen and Goncalves, and partially under Mogen's body and the comforter — to the FBI database CODIS, which tracks DNA profiles of people who have been arrested or convicted, according to the filing. When that didn't turn up a match, investigators turned to genetic genealogy, commissioning a private lab to build a DNA profile that could be used to search for relatives, the filing states.

 

The FBI then took over and uploaded the DNA profile "to one or more publicly available genetic genealogy services to identify possible family members of the suspect based on shared genetic data," the filing states. Investigators then built a family tree of hundreds of relatives "using the same tools and methods used by members of the public who wish to learn more about their ancestors," the filing states, citing social media, birth and death certificates and user-submitted information as examples. FBI investigators then sent local law enforcement a tip to investigate Kohberger.

That's interesting. I knew the FBI had a database that was limited to convicted criminals or prior tested suspects but I wondered how they got access to anyone else's info. Now I wonder if the FBI shouldn't be required to disclose the intent of using a "publicly available" site or need a court order rather than simply creating a bogus profile and uploading a dna sample to a site like 23 and me. Seems like a broad reach to me.

[SpecialK]

6 hours ago, Chibearsv said:

That's interesting.  I knew the FBI had a database that was limited to convicted criminals or prior tested suspects but I wondered how they got access to anyone else's info.  Now I wonder if the FBI shouldn't be required to disclose the intent of using a "publicly available" site or need a court order rather than simply creating a bogus profile and uploading a dna sample to a site like 23 and me.  Seems like a broad reach to me.

It's a very broad reach. The individuals who used these sites I'm sure expected some  form privacy. No one expected the FBI to "daisy chain" through and find relatives.. I saw another case of this breaking a 20 year old murder here: https://www.cbsnews.com/news/sarah-yarborough-how-investigators-tracked-down-teens-killer/.

 

[Ford2112]

 

[Namisgr11]

8 hours ago, Hammer Smokin' said:

While I don't disagree with you, if the data is used for medical establishment, even profit driven, it could still benefit society and the human race. That is a big "if", but I also understand profits. There is great interest in using the data to establish new medications.....not really to better human race, but to make profit. 

The bettering of the human race is just a positive side effect. 

There are several inherited diseases for which genetic data identified the underlying molecular cause of the disease and was used to devise the first disease-modifying treatments for them. An example is cystic fibrosis, which was found to be caused by gene mutations in a particular protein important for the function of cells that line our lungs. The information was crucial to developing small organic molecules that partially reverse the dysfunction of the protein, markedly reduce symptoms of cystic fibrosis, and significantly prolong life expectancy for those inheriting any of the disease-causing gene mutations and so contracting the disease.

The US has privacy laws known as HIPAA (the Health Insurance Portability and Accountability Act) that makes it illegal to disseminate anyone's protected medical history, information and records, including any genetic information. It's taken very seriously, to the point that state-of-the-art data encryption is a requisite feature for any organization housing and using protected medical information. For those conducting biomedical research involving human data, a single HIPAA violation leads to the culprit receiving a lifetime ban on conducting any further human data-based research.

[BrightonCorgi]

12 hours ago, Namisgr11 said:

There are several inherited diseases for which genetic data identified the underlying molecular cause of the disease and was used to devise the first disease-modifying treatments for them. An example is cystic fibrosis, which was found to be caused by gene mutations in a particular protein important for the function of cells that line our lungs. The information was crucial to developing small organic molecules that partially reverse the dysfunction of the protein, markedly reduce symptoms of cystic fibrosis, and significantly prolong life expectancy for those inheriting any of the disease-causing gene mutations and so contracting the disease.

The US has privacy laws known as HIPAA (the Health Insurance Portability and Accountability Act) that makes it illegal to disseminate anyone's protected medical history, information and records, including any genetic information. It's taken very seriously, to the point that state-of-the-art data encryption is a requisite feature for any organization housing and using protected medical information. For those conducting biomedical research involving human data, a single HIPAA violation leads to the culprit receiving a lifetime ban on conducting any further human data-based research.

HIPAA laws are not well enforced. How quick companies and people were to solicit their vaccine status? I have many large hospitals, pharma's, insurance providers as cyber security customers. They try, but HIPAA is hard to enforce. Very false positive prone.

[chasy]

And the saga continues….

https://www.cnbc.com/amp/2024/09/17/23andme-independent-directors-resign-from-board-read-the-ceo-memo.html

[BrightonCorgi]

If you submit a 23 and me test, use an alias account and email address.

[chasy]

That's all she wrote: https://www.wsj.com/business/dna-testing-company-23andme-files-for-bankruptcy-announces-ceo-resignation-82ad1c45?mod=hp_lead_pos4

[Lucas Buck]

Hard pass. I don’t get the appeal here at all. 

[Mike Mecklenburg]

NO

[BrightonCorgi]

How much do you want to bet someone beyond 23andMe has their database?