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."

Comments

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 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. 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 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 (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:Tit for Tat

[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:

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.