111–120 of 125 posts
I am sorry to all of you that gave your family DNA to a SV startup.
It must suck to feel like you have no say in what happens to your private information.
Earlier quoted context omitted.
Sure, you can sue the hollowed out shell of a bankrupt limited liability corporation that will soon have no assets for a court to sieze for whatever paltry damages a court finds.
You might get half a office chair , for a lifetime of disadvantages .
To be honest, this is more like "requesting the data to be deleted". There's nothing that guarantees that the personal information will be physically wiped out of the hard drives used to store them.
Not sure if others are having this problem, but my login no longer works, and password-reset emails never arrive (tried three times on three days w/o success)
For those curious about what actual data they are recording, they use Infinium Global Screening Array which records about 650-750k SNPs (single-nucleotide-polymorphisms) . Obviously this data infers heritage, disease risk, relations. It could be used for discrimination, surveillance, potentially poisoning . Everyone should request their data to be deleted, but this is an engineering forum, and we know what that means…
To be honest, this is more like "requesting the data to be deleted". There's nothing that guarantees that the personal information will be physically wiped out of the hard drives used to store them.
I deleted my data a few months ago and it happened fast enough that it didn't seem like there was a human in the loop.
if (userRequestsToDeleteAccount || user.deactivated) { user.deactivated = true; showDeletionSuccessfulPage(); }
In this implementation, the user believes their data is deleted, but it has not.
Earlier quoted context omitted.
Sure, you can sue the hollowed out shell of a bankrupt limited liability corporation that will soon have no assets for a court to sieze for whatever paltry damages a court finds.
Ideally the court can compel the purchaser(s) to destroy the data.
> Ideally the court can compel the purchaser(s) to destroy the data.
I suppose a court order holds more weight than checking a box on a web site, but I'm not sure how much I'd trust the eventual purchaser.
Worse yet, if the seller drops their guard (due to lack of funding for proper security) will someone steal the data? At that point web requests and court orders are moot.
I guess I'm seeing a black hat behind every bush. I'm not sure if this kind of data has any value on the black market.
Earlier quoted context omitted.
HIPAA isn’t really a personal privacy regulation at all ... Like other privacy regulation, it’s there to protect the industry and their business/commercial interests. Barriers to access mean less controversy, fewer lawsuits, fewer investigative news stories, fewer insurance disputes. I’d say it’s also designed to reduce contamination or adulteration of data: if every facility needs to do new testing and new evaluatio…
> HIPAA isn’t really a personal privacy regulation at all ... HIPAA as a whole is not. The HIPAA Privacy and Security Rules, which are enforced by a different entity than the rest of HIPAA, are (the bulk of HIPAA is insurance administration rules enforced by the Centers for Medicare and Medicaid Services; the Privacy and Security Rules are personal privacy and information security rules enforced by the DHHS Office of…
I once joined a health sharing ministry where reviews said "it requires an Olympic-class athlete in paperwork and bureaucracy". Being "not insurance" it was completely DIY and "self-pay" and begging for reimbursements after the fact.
I've also attempted to visit independent PCPs. An independent PCP who isn't part of a major health system, when they refer you out, refers you to some other independent specialist with their own process, their own IT tooling and portal, and their own claims/billing services. Now multiply those specialists by the number of your conditions, or simply the multiplicity of organs in your body, and all the fiefdoms commanded by different medical boards.
I sincerely pity any sane family of 4 or 5, because speaing for myself as an insane family of 1, the process is mind-blowing, byzantine, and frustrating by design, and the gatekeeping is exhausting but, obviously, necessary. Dealing with doctors arguably did not drive me insane, but it certainly helps keep me that way.
Gatekeeping doesn't end with single-payer and socialization, but all this back-and-forth and multiple independent systems should ideally be coalesced into one monolithic Brazil/12 Monkeys sized system.
I pity parents with sick children the most, I suppose. I mean it's bad enough for elderly parents and adult children to handle when they don't love their parents enough. But for parents to care for a sick child enough to funnel them into endless medical appointments, drugs, invasive therapies and even experimental Herr Mengele shit because it's cheap or free, feels like cruelty and exploitation being visited on that family, rather than mercy or healing. I found the Karen Ann Quinlan case (I suppose I was too young to remember when it hit the news before Terri Schiavo) and I found Karen's parents' attitude and comments to be quite poignant. It's called a "right-to-die" milestone, but I consider that the parents advocated for her right to be free from pain and distress associated with unnecessary medical treatment.
HIPAA is a fuckin' bugaboo when you're trying to coordinate care among payors, providers, billers, HIMS admins, family and friends, because all of these parties I mention are compartmentalized and the compartmentalization is nearly as fierce as military/espionage systems, except there's usually not a guy sitting next to the curtain wielding a semiautomatic rifle.
Earlier quoted context omitted.
Sure, you can sue the hollowed out shell of a bankrupt limited liability corporation that will soon have no assets for a court to sieze for whatever paltry damages a court finds.
Ideally the court can compel the purchaser(s) to destroy the data.
the current US presidential administration is in the process of completely hollowing out the US judicial system. nothing in the courts can be trusted if the SCOTUS can't be trusted.
but even with sane leadership there is nothing preventing stuff from being leaked or sold.
unless you can physically verify the shred-it guys destroying the disks, it's out there.
Earlier quoted context omitted.
I deleted my data a few months ago and it happened fast enough that it didn't seem like there was a human in the loop.
yes, but the implementation may, as far as you know, look like if (userRequestsToDeleteAccount || user.deactivated) { user.deactivated = true; showDeletionSuccessfulPage(); } In this implementation, the user believes their data is deleted, but it has not.