it wouldn’t be crazy for the 8.8 million 23andMe customers who once absently checked a box saying yeah, sure, use my data for whatever, to feel like they’ve been bait-and-switched now that their genes are laying the groundwork for potential cancer cures.
Yes, it would be crazy. And stupid. As a 23andMe customer this is EXACTLY the kind of thing I expected them to do with the information.
23 and me isn’t a healthcare provider and not a “covered entity” under HIPAA . So the protections that would apply if you got genetic testing through your doctor from an actual medical genetic testing company don’t actually apply to 23 and me. Though the company maintains it follows federal regulations voluntarily “as a courtesy.”
So don’t worry, your genetic data is protected by the good will of venture capital tech bros.
Yeah 23 and me wanted to have their cake and eat it too. They wanted to run tests for genetic diseases but not have to comply with any of the regulations that would entail, including critical things like HIPAA, offering proper informed consent before testing (which is not just a form but is an actual conversation with a medical professional), and offering up included follow-up genetic counseling services for individuals and their families. This is critical for genetic testing especially, which usually have results that are far more complicated than just a simple negative or positive. Basically just the airbnb or uber models of skirting regulations for profit but applied to genetic testing. FDA stopped them though, so instead of complying with regulations there for good reason they cut out the actual medical tests and now just compile things like, your risk of heart disease may be ~4% instead of ~3% because of this SNP marker we found. All so that the FDA and others can’t regulate them like true medical testing companies.
This seems like corporate whitewashing of all the insidious things they will actually sell user data for. Like “yeah we sell user data but only so we can make a cure for cancer” meanwhile they are selling it to organizations that are building biometric monitoring databases straight out of Minority Report.
This entire conspiracy theory falls apart once you realize there is more than one group trying to cure cancer, and have cured multiple cancers, as curing cancer is vastly more profitable than treating it.
Once your cancer is cured, you no longer need treatment, and you won’t seek treatment if there’s a cure.
Cancer cures (and eventually, vaccinations) are an arms race, and only efficacy matters
Everyone who thinks this is legitimately bad. I ask, what do you think of AI art data sets? Sometimes, to make something new you have to have mass amount of data to start with.
I think people who paid to have a service, checked a box for their sample to be used for research, and the research is to cure disease, have significantly lower reason to be upset than an artist who used Twitter to upload their work and had said work used as a data set to train a product that will try to make their career even MORE financially immposible.
Boohoo. You signed up for a good cause. Get over it.
Here’s the difference, an artist can make more art. You cannot change your DNA. If someone steals some of your art it’s not the end of the world. You can make more. If someone has your DNA, you can’t change it. Once its out there that’s it. More over having someone’s DNA can give you significant insight into into just the person whose DNA you have but also their parents and their children.
I mostly agree, except both my parents did it so they more or less have my DNA without my consent. They sure might not have the exact combination that I received from them but it’s more than I’m comfortable with.
Though the amount of possible permutations combined with epigenetic triggers you've activated makes it practically impossible to guess which combination you have.
By biological father was an anonymous sperm donor before the technology to sequence a person's DNA for under 10 billion dollars was a thing. They did not give their DNA to ancestry. Their sister did, having no clue that her brother had donated. Yet ancestry has matched her to several nieces and nephews, outing her brother's history to his sister and the children who were never supposed to have access to that info. It's not just your own information.
Similarly, one of my half siblings suddenly found out that his dad wasn't his birth dad.
Anyways, he happens to be cool with the fact that he suddenly had contact with offspring who weren't supposed to know who he was.
But our DNA is interconnected. It doesn't just belong to one person.
My dad an I both did 23 and Me. He made sure I knew he had done sperm donation before I met my mother just in case something came up. Well, it did! I have two half siblings from his donations! I think it’s cool, and I think he’s happy to know he helped two families have a child.
I have a lot of half-siblings. One set of two, one set of 3 (I've only met the oldest), one only child, there's me and my two full siblings, and the donor's actual child. There's more out there. Another we matched with their child, but I don't think we even know their name. Been pretty cool meeting all of them and the donor. Its actually been a happy experience, but one certain people had no choice in making.
There’s a big difference between a person’s DNA and a person’s art. DNA is the principle part of someone’s biometric identity, which can be used to reveal an enormous amount of information about a person. Hence it is not unreasonable to expect that its usage will be handled in a careful and clearly defined manner. Most countries have very strict laws on biometric data for a reason.
The same can not be said for a piece of art. While an an artwork will often convey aspects of the artist’s personality, and can conform to an identifiable style, it would provide no where near the level of insight into a persons physical identity as a DNA sample.
It also seems a stretch to conflate sharing something privately and publishing something publicly. The former will have expectations of privacy and control, regardless of whatever is stated any legalese incomprehensible to the average person. The latter however assumes a loss of control, to share something publicly is in some ways to cede it to the public.
Informed consent laws were around well before The Immortal Life of Henrietta Lacks came out. I think there were earlier publicized examples of subject mistreatment (like Tuskegee) that already pushed the field to be better.
Oh come one, we all knew this right? I spit in the tube knowing they’d use it for drugs, sale or some other research shit. They also feel like they made this pretty clear throughoit the process that they’d use your spittle for science.
That’s probably the best case scenario honestly. They use our saliva and cure cancer. That’s a great thing for humanity.
The other applications range from questionable to dystopian… Making a database of everyone’s DNA for law enforcement, data leaks and dark-web selling your DNA sequences, insurance buying the data to limit coverage after a claim, forensic genealogy as a way to catch criminals, using forensic genealogy to predict future offenders, targeted bio weapons, future tech like making clones of people, manufacturing fake evidence to plant, using genetic info to target certain types of people (race, gender, what if sexuality is genetic)
One things missing with most of the those: profits. I’d be more worried about bad actors stealing the DNA data and using it for all those. The businesses will keep within regulations to keep the profits rolling in without getting shutdown.
I never understood the appeal of the business in the first place. Why would you care who your great great great grandpa was? I don’t even care who my Grandpa was.
It’s commonly used by Adoptees to find their biological family. This can be important for a few reasons, including finally getting accurate family health history.
i had a coworker from my last job find his birth mother through one of these dna websites. the happiness he had on his face when he came back after finally meeting his biological family made me think about 1) how fortunate I am and 2) how many people have used these services to connect to long lost family members.
No question. It took me 6 years and thousands of hours to find mine (distant matches only, and birth father was dead, and birth mother was also adopted, which added an extra 2 years to the search). If it wasn’t for DNA I would never have located her though.
About 10 years ago they provided medical data from the samples. I used 23 And Me too confirm that a health problem I’d recently been diagnosed with was hereditary. At the time I remember being asked if my sample could be used to aid the type of research the OP talks about and I agreed to it.
A couple of years ago, I think 23 And Me was bought out by Virgin Healthcare, at that point I asked them to destroy all my data was worried about it being used to increase the cost of or preclude health insurance.
What’s funny to me about these DNA testing companies, isn’t the obvious data collection ploy, but the customers who feel compelled to buy the service. So the fuck what you’re 13% Cherokee and 27% Dutch and 5% Eastern African? Try developing a personality or interests.
Too many people in the world crave an identity that is original enough to be interesting, but not so original that it can’t be quantified or defined by accepted or understood identity templates. They need to be able to put a name to their identity so they can talk about it.
They do, there is a wide range of genetic tests done on newborns. Mostly looking for rare genetic diseases that need treatment from birth. www.genome.gov/…/Newborn-Genetic-Screening
Not suprised. Also not suprised they have been handing this data over to law enforcement for years now. Its no just to track down people whove taken said test but also people who are related even distantly. The fbi estimates they can use dna evidance to single dowm the possible people to 2 or 3 out of the entiriry of the us
The fbi estimates they can use dna evidance to single dowm the possible people to 2 or 3 out of the entiriry of the us
i am not sure what you mean by this sentence, but you probably misunderstood something.
dna doesn’t single down anything, as in it would help you track something. it tells you if two genetic profiles are a match (that means they come from same person), or that they are genetically similar and how distant they are - that tells you that the profiles come from x times removed relatives. after that, it is down to normal police work.
here is veritasium video about how they used this technology to find and convict the infamous golden state killer - piped.video/watch?v=KT18KJouHWg
with big enough database you simple have every single person in it. that still doesn’t back up the quote i disputed in any way. can you find source of the quote? i’d be interested to see the original.
They caught the Bay Area Strangler(or whatever his title was) by finding a dna relative match on one of these services and using that to narrow down suspects. DNA can absolutely be used to narrow things down without just having a direct 1:1 match saying it’s THAT person.
There are location, sex, age, and other factors to consider that help narrow it down. You could have 1000 close matches, but only half a dozen or so that could actually have committed the crime, and only a few of them that fit the profile.
I just remembered that destin from smarter everyday did a dedicated video about the privacy of this: www.youtube.com/watch?v=U3EEmVfbKNs, then, was it complete bull shit?
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