4 ms·
> asking reveals need, dependence, This is a much bigger issue than people realise in our technological society. Once, interaction with any doctor would be co
by nonrandomstring 4y ago
> asking reveals need, dependence,
This is a much bigger issue than people realise in our technological
society.
Once, interaction with any doctor would be considered confidential.
Today surveillance capitalism and so-called "big data" creates a new
problem for everyone, young or old, male or female.
We've long known that many men "die of embarrassment", because they
won't go to the doctor. Pride/shame aside, that now affects everyone.
People stop reporting symptoms because they don't want the stigma or
economic penalty resulting from data being "shared" (increasingly
without consent for "research" etc) - potentially to employers,
insurance companies, and various gatekeepers popping up in the digital
world.
It's ironic at many levels.
The information age should give us better health through ease of
communication and access to data. However, the research benefits to
the many that accrue from big-data are a burden upon the
few/individuals. Searching on Google for medical ailments is a sure
way to let the advertising world know all about your health
complaints, real or imagined, and invite spam, inappropriate and
intrusive insinuations. And, as we know recently, for women seeking
abortions it can lead to violence or imprisonment.
So there is an odd communistic utilitarianism at play that defeats the
very benefits our technologies should bring.
- rocqua 4y agoWe do need to be careful about medical data sharing. It has risks. However I doubt there are any (or any meaningful number of) cases of doctors and medical data-sharing actually causing stigma or economic penalties. That is outside of the 'traditional' a doctor just tells some friends. But that traditional case happens regardless of big data. The reason medical data sharing is risky is because _if_ it does leak, it can cause large stigma and economical damage. But I am not aware of any big-data related cases where that did happen. The legal protections (imperfect as they are) have either worked, or have caused the people who abuse them to hide their tracks.
- xboxnolifes 4y agoThe problem isn't about where data is shared or is leaked. The problem is if it is perceived to be, and if those who perceive it so are influenced by the perception.
- nonrandomstring 4y ago> I doubt there are any cases ... of data-sharing actually causing stigma or economic penalties. That's a strong claim. It took me 10 second to find these 4 stories of leaks of up to 45 million records and many written accounts of distress, lost jobs and broken relationships as consequences. https://news.trendmicro.com/2021/07/28/biggest-health-sector-data-breaches-1st-half-of-202$ https://news.trendmicro.com/2021/07/28/biggest-health-sector... https://www.cpomagazine.com/cyber-security/medical-data-leaks-have-exposed-45-million-reco$ https://www.cpomagazine.com/cyber-security/medical-data-leak... https://securereading.com/medical-data-leak-database-of-humana-customers-leaked-online/ https://securereading.com/medical-data-leak-database-of-huma... https://americanretrieval.com/medical-records-breach/ https://americanretrieval.com/medical-records-breach/ But as my sibling poster says too, your unevidenced doubts are neither here nor there, because it's the (equally unevidenced with respect to specifics) doubts of ordinary people that matter. And let's be honest, that mistrust is justified in a time where data leaks and abuse is rampant. Medical professionals and researchers may all be saints, but their halos are only as bright as the company they keep... Google, Meta, Microsoft, Amazon... and other big-tech cloud infrastructure on which sensitive data systems are built. Of course it's a tragedy. Somewhere in that data are cures and remedies. But we can't have nice things if some are allowed to crap in the punch-bowl and drive the guests out of the party.