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“”” "So there is no possibility a researcher may request blood spots for a specific research experiment … but then keep blood spots without the department's kno

“”” "So there is no possibility a researcher may request blood spots for a specific research experiment … but then keep blood spots without the department's knowledge to be used for other purposes?" she asked. "I want to say no" he said. "But I'm not ready to say no because I know how humans can be sometimes." “”” To me that just reads like he knows the answer is yes and is just trying to soft-pedal the truth. Moreover, since he’s literally the person selling the dna, it strains my credulity to believe that he hasn’t already known this, and if he had already taken steps to prevent it from happening, I’m betting he would’ve mentioned them specifically. “”” "De-identified DNA" However, Lorey stressed that the blood spots cards, stored in the state biobank, are "de-identified." There is no name or medical information on the card, just the blood spots and a number. “”” Is he trying to sell me on the idea that my dna can’t be used to personally identify me? That was a pathetic defense.

stinkbug 8y ago
>if he had already taken steps to prevent it from happening, I’m betting he would’ve mentioned them specifically. It said the studies have to be approved by a review board and that the researchers have to agree to destroy or return the samples when they're done. I don't think we should cynically assume "he knows the answer is yes." He may be hedging simply because he knows it relies on the word of the researchers. But biomedical researchers have been sensitized to issues of research ethics much longer than internet/data science practitioners. There can be significant penalties for procedural violations and in my experience people do not tend to play fast and loose with the rules.
- sonotathrowaway 8y ago
  > that the researchers have to agree to destroy or return the samples when they're done. So just like Cambridge Analytica, and I assume he’s going to appear on tv with that same stupid look on his face when he feigns surprise that he ‘suggestions’ get ignored? >He may be hedging simply because he knows it relies on the word of the researchers. Yea that’s exactly my point. He is literally the person selling this information, and who is in charge. He structured the terms of sale for his benefit. I hold him responsible for the consequences of his actions, irregardless of whether or not he tries to use ignorance or negligence as his defense. Honestly, I am basing my opinion of him on his attempt to convince me that my DNA isn’t personally identifiable. That really summed up his intellectual integrity for me.
shanghaiaway 8y ago
Obviously the number references your name in another register. Otherwise you wouldn't be able to request to have the sample returned. Got to love American state propaganda.
- jjeaff 8y ago
  Doesn't sound like propaganda to me. Seems clear. When samples for out to researchers, they only get the sample and no way to look up who it belongs to. However, officials who have access to the registry could obviously look you up. Hopefully there are controls in place to keep those same officials from having samples tested, but 8 doubt it.
  - shanghaiaway 8y ago
    Not clear at all. FUD. The existence of this registry is never mentioned in the article which makes it sound like samples are unidentifiable.
    - jjeaff 8y ago
      Ya, not clear if you didn't read it. The article clearly talks about the registry. It says that the registry is stored in a separate building from the samples.
      - shanghaiaway 8y ago
        Makes no difference whatsoever.

stinkbug 8y ago

>if he had already taken steps to prevent it from happening, I’m betting he would’ve mentioned them specifically. It said the studies have to be approved by a review board and that the researchers have to agree to destroy or return the samples when they're done. I don't think we should cynically assume "he knows the answer is yes." He may be hedging simply because he knows it relies on the word of the researchers. But biomedical researchers have been sensitized to issues of research ethics much longer than internet/data science practitioners. There can be significant penalties for procedural violations and in my experience people do not tend to play fast and loose with the rules.

sonotathrowaway 8y ago
> that the researchers have to agree to destroy or return the samples when they're done. So just like Cambridge Analytica, and I assume he’s going to appear on tv with that same stupid look on his face when he feigns surprise that he ‘suggestions’ get ignored? >He may be hedging simply because he knows it relies on the word of the researchers. Yea that’s exactly my point. He is literally the person selling this information, and who is in charge. He structured the terms of sale for his benefit. I hold him responsible for the consequences of his actions, irregardless of whether or not he tries to use ignorance or negligence as his defense. Honestly, I am basing my opinion of him on his attempt to convince me that my DNA isn’t personally identifiable. That really summed up his intellectual integrity for me.

shanghaiaway 8y ago

Obviously the number references your name in another register. Otherwise you wouldn't be able to request to have the sample returned. Got to love American state propaganda.

jjeaff 8y ago
Doesn't sound like propaganda to me. Seems clear. When samples for out to researchers, they only get the sample and no way to look up who it belongs to. However, officials who have access to the registry could obviously look you up. Hopefully there are controls in place to keep those same officials from having samples tested, but 8 doubt it.
- shanghaiaway 8y ago
  Not clear at all. FUD. The existence of this registry is never mentioned in the article which makes it sound like samples are unidentifiable.
  - jjeaff 8y ago
    Ya, not clear if you didn't read it. The article clearly talks about the registry. It says that the registry is stored in a separate building from the samples.
    - shanghaiaway 8y ago
      Makes no difference whatsoever.