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Comment by rdtsc | Hacker News Reader

Was wondering, in the general, is the patient always the copyright owner of this kind of data? Can they relicense it, publish it, do anything they want with it?

It seems like that would be the case, but there has been talk about patenting parts of the DNA in the past, and legally sometimes things work in un-expected ways.

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Yes. Patients own their data. HIPAA.

EDIT actually, it looks like I'm wrong in more states than I am right:

http://www.healthinfolaw.org/comparative-analysis/who-owns-m...

However, there are very strict rules on how that data can be used and shared.

Whoa, hold on there. HIPAA generally gives patients the right to access their medical records [1], but I don't think it says anything about whether they "own" it in the sense that they get to edit the data to their liking (I don't believe they do, in the US), and it certainly doesn't say anything about copyright.

Most of the HN crowd (and myself) would probably say that the ideal situation is for patients to own copyright and other rights in medical data generated about them, but I don't think this issue has actually been settled, either in a cultural or a legal sense [2].

[1]: http://www.hhs.gov/hipaa/for-professionals/privacy/guidance/...

[2]: http://www.medscape.com/viewarticle/837393

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.

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.

Yeah that's why I asked. On first thought it was "well yeah, it is their brain of course they own it". But then I could think of scenarios where imaging centers, doctors, hospitals, equipment manufacturers could get wierd about it.

I found a case in Canada, for example, about a hospital asserting ownership rights to a biopsy tissue sample.

Then remembered the DNA patentability case not too long ago as well:

https://en.wikipedia.org/wiki/Ass'n_for_Molecular_Pathology_....

I don't think it's that straightforward. HIPPA gives you the right to access your images, but the hospital or imaging center owns the copyright.

You own it but sign away patent and research rights.

You can't copyright such material at all.

https://meta.wikimedia.org/wiki/Wikilegal/Copyright_of_X-ray...

Interesting. I saw the MIT license and was wondering (mostly in general, not about this particular case) how that would work. I understand to re-license something, one must hold copyright ownership, and unfortunately, I could imagine imagining companies or even hospitals getting a bit strange about that.

hmmm, good point. i think the copyright issue would be fairly complicated here ... and you'd need a good lawyer basically. it'd likely hinge on how you constructed the argument.

I'm not sure how definitive that guide is. For what it's worth, all of my medical textbooks are very careful to include licensing and attribution information for all of their medical images, including X-rays. So even if there's not much case law on it, publishers seem to be erring on the side of caution.

Of note: if the scan is not done for diagnostic purposes, i.e. if no doctor looks at your images to do a diagnosis, then it is not considered medical data at all. Just like taking a photograph of yourself.

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