Researchers Push For Access To Confidential Government Records of the Public

schwit1 writes: Researchers in a number of fields want access to the vast amount of private government data that is routinely gathered from the public. Nature reports: "In the past few years, administrative data have been used to investigate issues ranging from the side effects of vaccines to the lasting impact of a child's neighborhood on his or her ability to earn and prosper as an adult. Proponents say that these rich information sources could greatly improve how governments measure the effectiveness of social programs such as providing stipends to help families move to more resource-rich neighborhoods. But there is also concern that the rush to use this data could pose new threats to citizens' privacy. 'The types of protections that we're used to thinking about have been based on the twin pillars of anonymity and informed consent, and neither of those hold in this new world,' says Julia Lane, an economist at New York University. In 2013, for instance, researchers showed that they could uncover the identities of supposedly anonymous participants in a genetic study simply by cross-referencing their data with publicly available genealogical information."

Tit for Tat

[MagickalMyst]

Give the average citizens access to private data on the research personnel, corporations and governments in exchange for information about average citizens.

It has to work both ways or not at all.

Re:Tit for Tat

[FriendlyLurker]

This data is not handed out to researchers for the specific reason that it will uncover many inconvienent truths that impact directly on moneyed interests. Common example: disparate cancer rates [wikipedia.org] of one town/city/county vs the next that highlight the high cost of pollution. Notice that the list I cited is very small and limited in scope and all from over a decade ago, a direct result of limiting access to the data. Most countries keep this data under tight wrap for this reason alone, and it has absolutly nothing to do with our "privacy".

Re:Tit for Tat

[Jiro]

Cancer clusters are subject to the Texas sharpshooter fallacy [wikipedia.org]. If you search a country with hundreds of millions of people there will be lots of places where the incidence of cancer is high, purely by chance. Also, you picked the Wikipedia article that lists cancer clusters, but the Wikipedia article about cancer clusters [wikipedia.org] mentions that 5% to 15% are statistically significant. And even statistically significant clusters can end up being caused by chance if you search enough places for them.

Also see this [rutgers.edu] (PDF linked from the Wikipedia article on Texas sharpshooter fallacy).

given a typical registry of eighty different cancers, you could expect twenty-seven hundred and fifty of California's five thousand census
tracts to have statistically significant but perfectly random elevations of cancer. So if you check to see whether your neighborhood has an elevated rate of a
specific cancer, chances are better than even that it does--and it almost certainly won't mean a thing.

Re:

[FriendlyLurker]

Ironic. In order to determine statistical significance you require access lots and lots of data, which as this article point out - is not available. From the National Cancer institute: [cancer.gov]

Determining statistical significance To confirm the existence of a cluster, investigators must show that the number of cancer cases in the cluster is statistically significantly greater than the number of cancer cases expected given the age, sex, and racial distribution of the group of people who developed the disease. If the difference between the actual and expected number of cancer cases is statistically significant, the finding is unlikely to be the result of chance alone. However, it is important to keep in mind that even a statistically significant difference between actual and expected numbers of cases can arise by chance.

Re:

[kheldan]

That's not going far enough. I want to put cameras and microphones in every room of their homes, that they aren't legally entitled to switch off, tamper with, or defeat in any way, and I want the feeds from them broadcast over the public Internet for the world to see. I mean the researchers, and the government officials involved in this. Now we're approaching parity.

care.data

[Anonymous Coward]

To see how this can become unstuck, see the disaster that is the UK care.data project, which TFA mentions.

What do they take us for?

[rmdingler]

Researchers in a number of fields want access to the vast amount of private government data that is routinely gathered from the public.

Of course... of course they do.

It's just clear on the order of crystal we can't trust them with it like we can the government.

Data breaches waiting to happen

[Rainbow Nerds]

I'm actually less bothered by researchers getting access to data to answer specific questions than I am about the potential for data breaches.

Almost invariably, giving researchers access to administrative data means creating a copy of that data. While it may not be easy to obtain illegally in its original storage location, creating a copy of the data increases the potential for a breach by the mere fact that another copy exists. It's also easy to see how researchers might not safeguard the data to the exten

Data gathered w/ registration used for marketing

[DutchUncle]

This happened years ago. Information that people were required to give for their car registrations was then sold to marketing firms, and the state in question simply insisted that it was THEIR data to use as they saw fit. Well, yes, it is their data, but it was gathered under requirement (because you can't drive a car without registering it), and was presumed to have some degree of "privilege" (in the attorney-client sense).

Our only hope is that even average non-tech people are waking up to the privacy