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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

by rlpb 9y ago

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.

matthewmacleod 9y ago
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.
- j-pb 9y ago
  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.
  - nkozyra 9y ago
    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.
    - phyller 9y ago
      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.
      - grayhatter 9y ago
        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).
  - fipar 9y ago
    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".
- dmitriid 9y ago
  > 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.
  - watwut 9y ago
    Test subject does not imply having public your medical data.
    - dmitriid 9y ago
      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.
      - giarc 9y ago
        They can share the data across organizations without sharing it with everyone in a publication.
    - Dylan16807 9y ago
      Maybe not all of it, but the default should probably be switched. There's no need to keep eyeball data private.
sunir 9y ago
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.
- randcraw 9y ago
  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.
  - mattkrause 9y ago
    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.
sunir 9y ago
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.
- deleted 9y ago
  [deleted]
BearGoesChirp 9y ago
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?
- Dylan16807 9y ago
  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.
  - mattkrause 9y ago
    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.
    - Dylan16807 9y ago
      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.
mattkrause 9y ago
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.

by rlpb 9y ago

matthewmacleod 9y ago

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.

j-pb 9y ago
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.
- nkozyra 9y ago
  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.
  - phyller 9y ago
    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.
    - grayhatter 9y ago
      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).
- fipar 9y ago
  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".
dmitriid 9y ago
> 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.
- watwut 9y ago
  Test subject does not imply having public your medical data.
  - dmitriid 9y ago
    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.
    - giarc 9y ago
      They can share the data across organizations without sharing it with everyone in a publication.
  - Dylan16807 9y ago
    Maybe not all of it, but the default should probably be switched. There's no need to keep eyeball data private.

sunir 9y ago

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.

randcraw 9y ago
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.
- mattkrause 9y ago
  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.

sunir 9y ago

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.

deleted 9y ago
[deleted]

BearGoesChirp 9y ago

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?

Dylan16807 9y ago
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.
- mattkrause 9y ago
  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.
  - Dylan16807 9y ago
    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.

mattkrause 9y ago

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.