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Comment by kendallpark | Hacker News Reader

I would argue that patients owning the copyright on their health data is actually a bad thing. It would make a lot of research much more difficult if they had to get rights to publish patient data even after de-indentification. We NEED that data to drive the field of medicine forward and as long as the patient's privacy is not compromised, it would make sense for the hospitals to own the data.

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I can see your point, but almost all clinical research already involves a consent process where the patient is told the benefits and risks of participating; signing away a license to a subset of their medical data could simply be included in the consent.

There are some regrettable examples of cells and tissue being taken from patient specimens without their knowledge, some of which give birth to entire fields of research, and then it is later unclear whether data that could re-identify the patient's family (like genomic data) can be published [1]. It can be really hard to fully de-identify imaging and molecular data.

[1]: http://www.nature.com/news/deal-done-over-hela-cell-line-1.1...

> I can see your point, but almost all clinical research already involves a consent process where the patient is told the benefits and risks of participating; signing away a license to a subset of their medical data could simply be included in the consent.

You don't need to get consent if the PHI is de-indentified and the data was obtained through a regular course of treatment (not a study). This is really important because hospitals can publish anonymized case reviews for rare disorders or perform chart reviews on patient outcomes (drug X produced Y outcome in Z patients with [some condition]). I read through a lot of these papers on a daily basis and can't imagine the state of medical literature if consent was needed for publishing this clinical data. Retrospective chart reviews are typically exempt from human subject regulations.

More info: http://wichita.kumc.edu/Documents/wichita/researchcompliance...

The cases of unauthorized cell lineages predate HIPAA and other health laws that would make such actions illegal today.

The solution to that would be granting permission to use anonymized datasets for research purposes, allowing all research to continue as is.

However, patients not owning their own health data makes no sense. What data could belong more to a person than their own health data?

From that perspective it seems equally absurd that a person wouldn't automatically own the copyright on a photo of themselves, and yet they don't - the photographer does. It seems plausible that the person who creates the physical record owns the copyright, regardless of the subject. (I don't disagree with you. Just a counterpoint.)

Someone further down the thread linked a piece about x-rays, but in general I'd suspect that an MRI or other visual produced by medical scanning technology would not be copyrightable in the first place; copyright does require a certain amount of creative effort in the production of the copyrighted work. The important case here, if you want to look up the history, is Feist v. Rural Telephone, which dealt with the (non-)copyrightability of a list of telephone numbers.

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