3 ms·

We 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

by rocqua 4y ago

We 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 ago
The 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.

by rocqua 4y ago

xboxnolifes 4y ago

The 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.