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Top Genetic Testing Firms Promise Not To Share Data Without Consent (washingtonpost.com)
Ancestry, 23andMe and several other top genetic testing companies pledged on Tuesday not to share users' DNA data with others without consent. "Under the new guidelines, the companies said they would obtain consumers "separate express consent" before turning over their individual genetic information to businesses and other third parties, including insurers," reports The Washington Post. "They also said they would disclose the number of law-enforcement requests they receive each year." From the report: The new commitments come roughly three months after local investigators used a DNA-comparison service to track down a man police believed to be the Golden State Killer, who allegedly raped and killed dozens of women in California in the 1970s and 1980s. Investigators identified the suspect using a decades-old DNA sample obtained from the crime scene, which they uploaded to GEDmatch, a crowdsourced database of roughly a million distinct DNA sets shared by volunteers. Investigators said they did not need a court order before using GEDmatch, sparking fresh fears that users' biological data might be too easy to access -- and could end up in the wrong hands -- without additional regulation on the fast-growing, already popular industry.
Hahaha! As though they are capable of stopping that. This data will all be stolen and sold.
Also, what's with the promises? Why isn't this a law?
If construction was anything like programming, an incorrectly fitted lock would bring down the entire building...
Databrokers and companies like this rarely sell raw data. They feed the raw data into algorithms to generate thousands of scores. For example, Cambridge Analytica created a psychological profile based on raw Facebook data.
In the USA these scores are protected as a form of corporate free speech. "they are just opinions".
As long as the public debate doesn't distinguish between these two types of data, then companies will continue to be able to make claims like this which don't address the real issue. What we really need to know is: do they generate and sell derived data?
In a world where people in power consider themselves above the law, and issue legal immunity to their corporate henchmen, what would it take for the corporations to be too scared to betray their customers?
Also, what's with the promises? Why isn't this a law?
Why do you think Europe passed GDPR? I would assume the new similar California law would cover this too.
After literally hundreds of data leaks and personal information having become a play toy for companies to be bought and sold with impunity, after Sugarhill had to testify in front of Congress to that effect (so they can't really say that they never ever noticed anything like this), WHAT THE FUCK more do you need to establish a need?
We used to have a Bill of Rights. Now, with the rights gone, all we have left is the bill.
WHAT THE FUCK more do you need to establish a need?
Maybe some actual damages. For all the Slashdot outrage about data breaches, it isn't really something that the public cares about, and very few consumer losses can be traced to the breaches. Your card data is more likely the be lifted by the waitress at a local restaurant.
I am a customer of 23andMe, and to be honest, I couldn't care less what they do with my data. I have a hard time imagining any negative consequence. If the NSA wants my DNA sequence, they could get it elsewhere anyway. Could an insurance company use it to deny me coverage? Unlikely, since that is illegal, and I don't have any genetic problems, so an insurance company is more likely to give me a discount.
So when there is another breach, Slashdot will throw a hissy fit, everyone else will yawn, and life will go on.
Ask any credit card company whether there are damages every single time some credit card processor gets raided. Oh, wait, no, they won't tell you. Because that would tell people to stop using those cards, because the amount of credit card fraud due to cards stolen in data breaches is through the roof. Want proof? Just call your credit card company and dispute some purchases. They don't even investigate anymore. They just refund you, have you sign a shut-up paper and issue a new card.
I don't know about your country and waitresses there, and maybe if you paid them a decent salary they wouldn't be tempted, but I know that my chance to see my card being used in Generistan to buy shit that cannot be tracked is heaps higher than seeing it used to buy shoes of an internet platform.
We used to have a Bill of Rights. Now, with the rights gone, all we have left is the bill.
It's illegal to deny you coverage, sure, but it's not illegal for them to charge you an insanely high premium, "just in case".
Insurance companies are the last corporations on Earth that are allowed to openly discriminate on basis of gender, age, colour, place of residence, medical history, genetics and all sorts of other factors. Compare the rates for a 21-year-old male driver's insurance to the rates of a 21-year-old female.
You: "Why does it cost more for the male drivers?"
Insurance: "Men are more aggressive drivers, we need to charge them more."
You: "That's discrimination! That's stereotyping!"
Insurance: "Tough shit. You want insurance or not? You can always take the bus if you say no."