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Here is a simple exercise: imagine these were your medical records and your former employer gave them to a third party for profit.

Imagine I'm a dead guy from the 19th century?

They have much more than just 19th Century records. Where'd you get 19th century as an upper bounds from?

It seems hard to find date ranges for what they exactly collect and store, but I found this relevant line that gives 2002 as an upper bounds:

  "More than 99 percent of the 338 specimens from 1917–1969 were completely desiccated, as were over 72 percent of the 218 from 1970–2002."

https://www.ncbi.nlm.nih.gov/books/NBK236827/

Also, this gem:

  The JPC does not have documentation regarding any consent forms signed by patients or research participants whose data or specimens were submitted to the repository (Baker personal communication, 2011a). Such consents may have been obtained for clinical procedures used to excise specimens at facilities where people received medical care, but it is highly unlikely that they included notification that the specimens could be sent to a remote repository or used later for education or research purposes. Consents for research use may have been obtained for some materials gathered for the war or cohort registries, but the JPC has no documentation on these (Baker personal communication, 2011a).

The last statement is correct- up until about 10 years ago, the vast majority of consent forms didn't explicitly state that the specimens could be reused for other studies later, that hadn't been consented to.

Now most consent forms explicitly call out the option of the data collector to share the data with more parties for further use beyond the scope of the original study.

Good to know, thanks. Though, that's still a pretty shoddy state of affairs.

The deeper you go in medical data, the shoddier it gets.

Can you think of a less obtuse way to interpret the comment? You may be missing a good point.

I, personally, would be 100% fine with this, as long as:

1. My data was anonymized.

2. At least in the Navy's case, that there was some assurance that some of the work would be made available back to the public, i.e. if all the data was tagged and organized in a way that an open source data set could be made (again, anonymized), but the analysis and any models built would be proprietary to Google.

I honestly don't understand why the knee jerk reaction would be to be upset at your simple exercise.

Because you served to help your country and then call it a day, not have your medical legacy live on in a Google product after you’ve left. Just another thumb in the eye for vets from a public that doesn’t care beyond a NFL game. That’s where the simple exercise could lead.

Yeah but that data can be used to make things better for you later. For example, with the burn pits in Iraq where soldiers no longer have to individually prove harm: https://www.publichealth.va.gov/docs/exposures/ten-things-to....

This data could lead to a discovery like “hey a statistically significant portion of people deployed at (x) between years y and z developed this type of medical condition - the military is responsible and needs to pay them.”

If there’s no value to digitizing this data, why is the military paying Google to do it? It’s not like Google is purchasing it

> Yeah but that data can be used to make things better for you later.

Or, the more likely case, someone figures out how to de-anonymize it and it could be used to hurt me later. That seems much much more likely to me.

1. I dont think DNA can be sufficiently anonymized.

2. I think de-anonymization not only hurts you but also could hurt a large % of the people you are directly related to.

The military members served the public. Google is profiting. You have it backwards.

How is it for profit? The government is paying Google, not the other way around.

Your former employer is paying a 3rd party service to digitize your old health records.

I’d much rather have digital records instead of paper files which can be trivially destroyed or lost. Imagine if I got cancer and had to sue this former employer and I could subpoena for this info.

Disclosure: I’m a vet and work in tech.

On one hand, the DoD playing chess with plug and play resources that Soldiers are. Tech employees being willfully blind to the ethics of this. No surprise either way, China got my data via OPM anyway.

On the other: sick! That’s great Google has the medical records detailing people’s worst moments from war (TBI, PTSD. amputations) or others (spousal abuse, drug abuse), all for a good product! A maxim vets are pretty good at following is your DoD past stays with you and the VA, but that’s great Google gets to poke under the covers too. Hope the product is useful for an OKR. This doesn’t stop with pathology slides from days of yore and we all know it.

With the caveat that I do not know the specifics of this case, I agree in principle with giving health companies access to large amounts of data like this. Research like this could save a huge amount of lives, but it needs lots of data, which is currently quiet difficult to collect. Ideally there'd be some sort of central, deidentified repository of data that all researchers can access for free. But in the absence of that, I'll take what I can get. I've lost too many people to cancer; I'd sacrifice a lot to see better diagnostics. Maybe I'm strange, but I don't care if Google or any other healthcare has access to all of the x-rays, mris, and blood tests that I've ever done provided that they're deidentified.

Researchers don't need access to the data. They need to be able to run analyses on the data and get results. This can be achieved without handing over the data and in the UK the NHS actually built a system to do this. And then the corrupt Tory government handed the data over to Palantir anyway.

What exactly do you mean? Very few, if any, hosts of health research data have the data, network, and compute infrastracture to make use of their data. It should be in the cloud so it's actually useful.

I mean that the researchers submit jobs to the data owners who run the jobs, possibly in the cloud, and return the results to the researchers. The researchers don't need direct access to the data. I, along with millions of others, have opted out of every NHS digital initiative because I don't trust them. And my instincts were right because the data was given to Palantir. But if I was given the choice I would allow my data to be used in the privacy-respecting system described above.

I honestly don't think that model works. What if you want to join data between two datasets from two providers? Who pays for the cloud? What if the researchers want to do more featurization, making snapshot views for performance?

Having looked at similar contracts (specifically UofC's CrimeLab running analysis of police data against UofC hospital xray data), the pairing is required to be done on a host such that the xray data never leaves the UofC imaging infrastructure. Contractually, at least. Not exactly sure where your questions are coming from.

yeah, that happens. the researchers hate it (the service provided is often inferior to their own in-house setup) and it's mainly to retain some level of funding for the lab, rather than benefiting the most users. Also, university infrastructure is far less secure than a cloud account run by a cloud provider.

The central repository is TCGA and dbGAP. It's pseudoanonymized but some datasets are restricted acces. When I worked for Google, we applied for access and downloaded the whole thing (petabytes) and then got an email from NCBI that we had to delete it all. Our idea was that we could serve a copy of it "for free" for researchers (internal to Google or external) to use in the cloud (without having to redownload it). This morphed a bit and became Public Datasets with User-Pays access. And AWS hosts it as well. Far more people use the data on AWS than anywhere else.

> some datasets are restricted acces.

That does not impress me. China and North Korea will get it.