In the mix…data-sharing’s impact on Alzheimer’s research, the limits of a Do Not Track registry, meaning of data ownership and more

August 13th, 2010 by Grace Meng

1)  It’s heartening that an article on how data-sharing led to a breakthrough in Alzheimer’s research is the Most Emailed article on the NYTimes website right now. The reasons for resisting data-sharing are the same in so many contexts:

At first, the collaboration struck many scientists as worrisome — they would be giving up ownership of data, and anyone could use it, publish papers, maybe even misinterpret it and publish information that was wrong.

But Alzheimer’s researchers and drug companies realized they had little choice.

“Companies were caught in a prisoner’s dilemma,” said Dr. Jason Karlawish, an Alzheimer’s researcher at the University of Pennsylvania. “They all wanted to move the field forward, but no one wanted to take the risks of doing it.”

2) Google agonizes on privacy. The Wall Street Journal article discusses a confidential Google document that reveals the disagreements within the company on how it should use its data.  Interestingly, all the scenarios in which Google considers using its data involve targeted advertising; none involve sharing that data with Google users in a broader, more extensive way than they do now.  Google believes it owns the data it’s collected, but it also clearly senses that ownership of such data has implications that are different from ownership of other assets.  There are individuals who are implicated — what claims might they have to how that data is used?

3) Some people have suggested that if people are unhappy with targeted advertising, the government should come up with a Do Not Track registry, similar to the Do Not Call list.  But as Harlan Yu notes, Do Not Track would not be as simple as it sounds. He notes that the challenges involve both technology and policy:

Privacy isn’t a single binary choice but rather a series of individually-considered decisions that each depend on who the tracking party is, how much information can be combined and what the user gets in return for being tracked. This makes the general concept of online Do Not Track—or any blanket opt-out regime—a fairly awkward fit. Users need simplicity, but whether simple controls can adequately capture the nuances of individual privacy preferences is an open question.

4) What happens to a business’s data when it goes bankrupt? The former publisher and partners of a magazine and dating website for gay youth were fighting over ownership of the company’s assets, including its databases.  They recently came to an agreement to destroy the dataEFF argues that the Bankruptcy Code should be amended to require such outcomes for data assets.  I don’t know enough about bankruptcy law to have an opinion on that, but this conflict illuminates what’s so problematic about the way we treat data and property.  No one can own a fact, but everyone acts like they own data.  Something fundamental needs to be thrashed out.

5) Geotags are revealing more locational info than the photographers intended.

6) The owner of an ISP that resisted an FBI request for information can finally reveal his identity. Nicholas Merrill can now reveal that he was the plaintiff behind an ACLU lawsuit that challenged the legality of national security letter, by which the FBI can request information without a court order or proving just cause.  In fact, the FBI can even impose a gag order prohibiting the recipient of the NSL from telling anyone about the NSL, which is what happened to Merrill.

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