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> I haven’t been able to bring myself to do it, due to trust issues related to handing over something like that Same here. Imagine the value of this data in th

by dkarl 3y ago

> I haven’t been able to bring myself to do it, due to trust issues related to handing over something like that Same here. Imagine the value of this data in the hands of insurance companies that are willing to misuse it. Will we, as a society, be able to prevent that "value" from being realized?

deleted 3y ago
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samtho 3y ago
Federally, health insurers cannot use this data under GINA[0] and SB41[1] in California requires explicit permission be granted by the customer in order for the data to be shared with 3rd parties. In general, however, insurance companies are going to be reluctant to trust this information as it’s not established that it has real medical value outside the handful of markers we’ve clearly identified. [0]: https://medlineplus.gov/genetics/understanding/dtcgenetictesting/dtcinsurancerisk/ https://medlineplus.gov/genetics/understanding/dtcgenetictes... [1]: https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=202120220SB41 https://leginfo.legislature.ca.gov/faces/billTextClient.xhtm...
- averageRoyalty 3y ago
  "Federally" doesn't matter to the 95% of us who don't live in America.
- Analemma_ 3y ago
  Oh, it's against the law! Well that's ok then, companies never break laws. In reality, there will be (and probably already is) an impenetrable web of "data aggregators" buying genome data from other aggregators who are buying it from still other aggregators, so that the info will be thoroughly laundered by the time it actually gets to the insurance company to hike your premiums. This both obscures its true origin and lets there be a little contractor to throw under the bus when discovered and deflect blame. Don't fucking kid yourself: if personal genome data is useful, it will be used, no matter what the law says.
  - infinitezest 3y ago
    There is no need to break the law if your pockets are deep enough to write it yourself.
ilovetux 3y ago
I'm more worried about a scenario like Elon Musk buying the company for the data and making the data available to extremists who would love to target people of certain ethnic backgrounds who happen to be in positions of power.

by dkarl 3y ago

deleted 3y ago

[deleted]

samtho 3y ago

Federally, health insurers cannot use this data under GINA[0] and SB41[1] in California requires explicit permission be granted by the customer in order for the data to be shared with 3rd parties. In general, however, insurance companies are going to be reluctant to trust this information as it’s not established that it has real medical value outside the handful of markers we’ve clearly identified. [0]: https://medlineplus.gov/genetics/understanding/dtcgenetictesting/dtcinsurancerisk/ https://medlineplus.gov/genetics/understanding/dtcgenetictes... [1]: https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=202120220SB41 https://leginfo.legislature.ca.gov/faces/billTextClient.xhtm...

averageRoyalty 3y ago
"Federally" doesn't matter to the 95% of us who don't live in America.
Analemma_ 3y ago
Oh, it's against the law! Well that's ok then, companies never break laws. In reality, there will be (and probably already is) an impenetrable web of "data aggregators" buying genome data from other aggregators who are buying it from still other aggregators, so that the info will be thoroughly laundered by the time it actually gets to the insurance company to hike your premiums. This both obscures its true origin and lets there be a little contractor to throw under the bus when discovered and deflect blame. Don't fucking kid yourself: if personal genome data is useful, it will be used, no matter what the law says.
- infinitezest 3y ago
  There is no need to break the law if your pockets are deep enough to write it yourself.

ilovetux 3y ago

I'm more worried about a scenario like Elon Musk buying the company for the data and making the data available to extremists who would love to target people of certain ethnic backgrounds who happen to be in positions of power.