A paper about eye damage in astronauts got pulled for “security concerns.” Huh? | Hacker News Reader

A paper about eye damage in astronauts got pulled for “security concerns.” Huh?

retractionwatch.com

There's only a relatively small number of astronauts, so it seems the concern here is that the medical condition of individual test subjects is at risk of being disclosed by the paper.

I would consider it a condition of astronauts' employment that their medical condition will be made public where a link with astronautical activity is plausibly hypothesized (ie. with a very low standard of proof).

They are test subjects, after all, funded at least in part by the taxpayer. Medical investigation is part of the point of their jobs. Suppression of the results harms scientific progress and is not in the public interest.

I'm sure they wouldn't see it that way, and neither do I.

There are lots of things that we could do to speed up scientific progress, but they're not all necessarily ethical. Making private individuals' medical records effectively public is quite possibly one of those things.

I'm pretty sure there are enough people that voluntarily give up their medical privacy AND want to go to space.

If you don't want to disclose your medical record, fine. But don't expect others to funnel billions into you just to make your dream of going to space come true.

Maybe they can do so voluntarily. If you exclude people from the program because they're not bending to the will of "my tax dollars" arguments you'll assuredly lose out on talented people in a small specialization pool.

My understanding is that there are literally hundreds of qualified, passionate applicants for each spot. I've met a few. If we are spending billions of dollars to strap that particular person to a rocket, I think humanity should be able to benefit as much as possible. I don't think its unreasonable to have as a requirement for that service that certain health records might not remain private. Just like it would not be unreasonable to require certain high level public servants to divulge their tax records, as long as it was understood as a requirement beforehand.

The problem is not, if we have enough applicants. It's did THESE people agree to it. If not, it's wrong to disclose this data publicly without their consent. This is an example of better to ask permission, not forgiveness.

Combined with the notion that I'm sure the paper will be anonmised and re-released. I'd even bet this is a non-issue. (Assuming the assertions previously made in this thread of course).

I fully agree with your first sentence but I don't think the amount of people who want to go to space is a good measurement here, since most would not qualify for the job anyway.

So with all due respect, to me that means your second sentence may well be replaced by "If you want to make the disclosure of medical records a requisite to be an astronaut, don't expect too many qualified applicants to show up for the job".

> I'm sure they wouldn't see it that way

The know that they are test subjects. Read "An Astronaut's Guide to Living on Earth", and they know it's a part of their job to be test subjects.

Test subject does not imply having public your medical data.

That data is extremely valuable way outside NASA, it's routinely shared with other countries that fly to space (yes, with Russia, too, and Russia sends their data to the States).

As long as it's space-related, the astronaut's medical history is really anything but private.

What NASA could be trying to do is limit press access to individual astronauts because they are still entitled to their private lives. In this case, yes, they will be concerned about personal details leaking.

They can share the data across organizations without sharing it with everyone in a publication.

Maybe not all of it, but the default should probably be switched. There's no need to keep eyeball data private.

However, it isn’t a condition of their employment.

The argument that suppression of medical records harms scientific progress applies to all people and all records and all scientific inquiry. Your argument needs to be more specific.

I see astronauts as equivalent to military personnel -- if their job (or posting) exposes them to hidden pathogens or risk, even if they "knowingly" volunteer, their employer has an obligation to publicly reveal the source and severity of the risks that will be incurred (like a MOS that involves scraping asbestos from older navy ships -- a famous source of asbestosis and mesothelioma in ex-sailors). Only an open unrestrained discussion can reveal ALL the inherent risks and inform future soldiers/sailors/airmen/marines before they enlist what may be the military's latest Faustian bargain.

Can't really argue with the idea that people should make informed decisions–and part of this process should include discussing things that have happened to others in similar situations.

On the other hand, that's quite different from publishing personally-identifiable information (and the identifiably does seem to the sticking point here) about someone's health. You could, for example, present aggregate data, or ask the potential employees to sign some kind of data-use agreement if you want to show them individual data.

However, it isn’t a condition of their employment. Nor would it meet ethical standards for research set since WW2.

The argument that suppression of medical records harms scientific progress applies to all people and all records and all scientific inquiry. Your argument needs to be more specific. I mean WW2 is the counter argument do yours better be good.

Even if they consented to such conditions in the past, if they have since changed their mind and wish to remove consent, how is it ethical to not allow them to do so?

You could say the same thing about a mortgage contract.

There are very few situations where continuous consent is important, and I don't think "releasing documents" is one of them.

Yes, it absolutely is.

Informed consent is one of the bedrock principles of (ethical) human subjects research. Part of the process is that subjects have to be able to withdraw from the study at any time.

In the US, this is literally the law (45 CFR 46.116), which says that "the subject may discontinue participation at any time without penalty or loss of benefits to which the subject is otherwise entitled." This would likely include the release of protected health information after it is collected, especially when it comes from a small probably-easy-to-deanonymize group.

Informed consent is important. But being able to withdraw from record release is not integral to the very concept of informed consent. It's fine as a requirement for everyday studies. But when you have an absolute expert subject, I think upfront informed consent is workable.

Assuming the astronauts are civilian employees[0], I'm not sure that releasing protected health information could be a condition of employment.

There are fairly strict rules around human subjects research and a major theme of the rules is that you can't be coerced into participating. This is particularly true when employees are used as experimental subjects; DHHS says that "Employee participation raises questions about the ability of employees to exercise free choice, for example, because of the possibility that a decision to participate could affect performance evaluations or job advancement, even if it is only the employee’s perception that this is the case." Saying "let us release your health records or you're fired" thus appears to be wildly illegal.

[0] I think the rules for military employees are slightly different, but I would imagine they're not too far off.

It's Scott Kelly. He recently came back from space and had something on his eye. He it's saying it on his talks.

The article is:

Role of Cerebrospinal Fluid in Spaceflight-induced Ocular Changes and Visual Impairment in Astronauts

https://doi.org/10.1148/radiol.2017161981

It can be found, as usual at SciHub Moscow. So the Russians who use Sci Hub Moscow can read it, but American doctors who subscribe to Radiology cannot...

The original article is worth reading, it talks about choroidal folds and visual impairment that lasts for years after space flight.

American doctors cannot use SciHub?

Well, they can but they can't really publicly admit they do.

I use it on a BID basis (medical).

Soon, maybe not, at least without a VPN: https://www.sciencealert.com/controversial-free-research-sit...

http://libgen.io/scimag/index.php?s=10.1148%2Fradiol.2017161...

Libgen and SciHub Moscow links to the censored paper.

retracted, not censored.

The mechanism used was a retraction notice, however there was no debate that the research was legitimate and valid, so it could plausibly be said that the retraction mechanism was used to censor the radiology journal that had published the paper.

From the article, it sounds like NASA felt the author didn't respond promptly enough to their request for him to redact personally identifiable information (though he did redact it eventually), and is punishing him for it (by pulling both his research and the grant they gave him).

Wait, why are you worrying about Scott Kelly's medical data?

That's what he was in space for, right?

For those interested: the paper is available on researchgate.net apparently

Streisand effect in 5..4..3..

The page is not responding. I smell Bigfoot.

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