6 ms·

I hear the concern, but no. There are ways to inject randomness into a dataset, giving subjects plausible deniability without compromising the integrity of the

I hear the concern, but no. There are ways to inject randomness into a dataset, giving subjects plausible deniability without compromising the integrity of the outputs. See https://pair.withgoogle.com/explorables/anonymization/ https://pair.withgoogle.com/explorables/anonymization/ for a nice example. Bottom line is, there are ways to share such data safely. Whether the data owner cares enough to do the extra work, especially if doing so removes a competitive advantage, is another story.

invokestatic 5y ago
I have no qualms with releasing a subset of the data that is properly and irreversibly anonymized. But you have to keep in mind that by introducing “randomness” into the dataset, you limit it’s usefulness to check to make sure the statistics match up with the study’s official topline results. Furthermore, the FDA submission dataset is essentially a database with dozens of tables each with often hundreds of columns. It’s a LOT of data, with exponential complexity to make sure all the right fields are redacted. There’s also the point that pharma companies are under no obligation to release this data. It’s generally considered proprietary. That said, due to the substantial amount of government funding provided to the development of the vaccine, I think we should be entitled to this information.
ashtonkem 5y ago
If the point is to improve public trust “don’t worry, we manipulated the data to make it more anonymous, but we pinky swear that we didn’t manipulate it in a way that changes the results” is not a good approach.
- tpoacher 5y ago
  It is when it's mathematically robust by design, as in the linked post. Nobody's saying "tamper with the evidence to demonstrate favourable outcomes" here. And if tampering with the data to favour the data donor were a concern in the first place, then it should be a concern regardless of whether the data donor said they followed further anonymization protocols or not.
  - ashtonkem 5y ago
    > Nobody's saying "tamper with the evidence to demonstrate favourable outcomes" here. Yeah, so you have badly misread my point, and you're arguing against something completely unrelated to what I'm saying. Of course you can add randomness to the results to hide individuals without messing with the results in aggregate. That's obvious, and I'm not disputing it. The issue is that that's a PR nightmare. Nobody here might be saying "tamper with it to change the outcome", but I guarantee you that people out wider media will accuse the CDC and Pfizer of doing exactly that. I can see the chyron now, "CDC ADMITS TO MANIPULATING DATA". Organizations like the CDC need to think not just about how their message will be heard, but how it might be twisted and abused by bad faith actors. You are absolutely right about how you can safely introduce randomness, but you are completely wrong about how that will be handled by the public after bad faith actors get their hands on that fact.
    - tpoacher 5y ago
      Well now we're completely in the realm of speculation, but, ok, sure. But I don't necessarily think this would go down much worse than "Big Pharma refuses to share data, what could they be hiding from us" bad faith actors. At least in the 'inject randomness' scenario you can do some damage control in the media by bringing in experts to explain how this is a valid thing to do and how it protects the average joe from having their lives turned upside down just because they foolishly agreed (or worse, did not agree) to have their data collected.

invokestatic 5y ago

I have no qualms with releasing a subset of the data that is properly and irreversibly anonymized. But you have to keep in mind that by introducing “randomness” into the dataset, you limit it’s usefulness to check to make sure the statistics match up with the study’s official topline results. Furthermore, the FDA submission dataset is essentially a database with dozens of tables each with often hundreds of columns. It’s a LOT of data, with exponential complexity to make sure all the right fields are redacted. There’s also the point that pharma companies are under no obligation to release this data. It’s generally considered proprietary. That said, due to the substantial amount of government funding provided to the development of the vaccine, I think we should be entitled to this information.

ashtonkem 5y ago

If the point is to improve public trust “don’t worry, we manipulated the data to make it more anonymous, but we pinky swear that we didn’t manipulate it in a way that changes the results” is not a good approach.

tpoacher 5y ago
It is when it's mathematically robust by design, as in the linked post. Nobody's saying "tamper with the evidence to demonstrate favourable outcomes" here. And if tampering with the data to favour the data donor were a concern in the first place, then it should be a concern regardless of whether the data donor said they followed further anonymization protocols or not.
- ashtonkem 5y ago
  > Nobody's saying "tamper with the evidence to demonstrate favourable outcomes" here. Yeah, so you have badly misread my point, and you're arguing against something completely unrelated to what I'm saying. Of course you can add randomness to the results to hide individuals without messing with the results in aggregate. That's obvious, and I'm not disputing it. The issue is that that's a PR nightmare. Nobody here might be saying "tamper with it to change the outcome", but I guarantee you that people out wider media will accuse the CDC and Pfizer of doing exactly that. I can see the chyron now, "CDC ADMITS TO MANIPULATING DATA". Organizations like the CDC need to think not just about how their message will be heard, but how it might be twisted and abused by bad faith actors. You are absolutely right about how you can safely introduce randomness, but you are completely wrong about how that will be handled by the public after bad faith actors get their hands on that fact.
  - tpoacher 5y ago
    Well now we're completely in the realm of speculation, but, ok, sure. But I don't necessarily think this would go down much worse than "Big Pharma refuses to share data, what could they be hiding from us" bad faith actors. At least in the 'inject randomness' scenario you can do some damage control in the media by bringing in experts to explain how this is a valid thing to do and how it protects the average joe from having their lives turned upside down just because they foolishly agreed (or worse, did not agree) to have their data collected.