3 ms·

You can't ask for (nor give) a consent that broad: "use my dna for whatever research you want by whoever". Having been involved a bit with asking for informed c

by yread 5y ago

You can't ask for (nor give) a consent that broad: "use my dna for whatever research you want by whoever". Having been involved a bit with asking for informed consent in a hospital, it's sooo difficult to design a specific- and useful-enough consent form for legitimate not-for-profit medical research. I hope these jokers go to prison for a long time.

pas 5y ago
don't hold your breath. ex-doctor the OG antivax Wakefield committed malpractice by not getting informed consent to do all kinds of tests on autistic children, and he's free as ever. :/
- ben_w 5y ago
  Aye, and that sucks, but (1) he did his thing before the Data Protection Act 1998 let alone GDPR, and (2) violations of medical consent are different from and (IMO as a generalisation) much more serious than violations of data processing consent. Not sure what laws he might have violated, though I think he would be breaking one if he calls himself “doctor” at this point?
  - pas 5y ago
    He conducted research for money. This involved ~7 children spending 1 week in a hospital. The children were young (mean age 6) and some had severe autism, so they had to be sedated, held down by adults, etc. His "informed consent" form does not describe the risks. https://www.youtube.com/watch?v=8BIcAZxFfrc&t=1h7m17s https://www.youtube.com/watch?v=8BIcAZxFfrc&t=1h7m17s (Where was the IRB during all this? Good question.)
    - ben_w 5y ago
      I was already in agreement that he sucks, but that doesn’t actually tell me he committed an offence under section Foo of the Perfectly Sensible Yet Obscure Medical Consent Act 1869 or whatever, so I don’t know if legally speaking he ought to have been locked up.
nmstoker 5y ago
They will get clobbered by the ICO as it's clear this was neither informed consent nor was the data retention period reasonable. Burying terms of such significance results in unenforceable agreements, so it's naive (but not unexpected) of Cignpost to come out saying they are in full compliance with data protection laws. I would urge anyone potentially impacted to write to the ICO to register their concerns.
Mezzie 5y ago
The particularly shitty part is that often people are/were REQUIRED to test themselves for COVID and people were stuck with whatever tests were available. So governments demanded people buy goods from private companies, and then the private companies abused their customers. It's like a giant shining example of why we're quickly becoming no-trust societies. When I give my blood and DNA for MS trials, I get long consent forms and details, which I can alter. (I always cross out the parts that enable my data to be used for profit; if they want to know why I have benign MS, I hope they figure it out, but I want them to use my information to help people, not gouge them.)

by yread 5y ago

pas 5y ago

don't hold your breath. ex-doctor the OG antivax Wakefield committed malpractice by not getting informed consent to do all kinds of tests on autistic children, and he's free as ever. :/

ben_w 5y ago
Aye, and that sucks, but (1) he did his thing before the Data Protection Act 1998 let alone GDPR, and (2) violations of medical consent are different from and (IMO as a generalisation) much more serious than violations of data processing consent. Not sure what laws he might have violated, though I think he would be breaking one if he calls himself “doctor” at this point?
- pas 5y ago
  He conducted research for money. This involved ~7 children spending 1 week in a hospital. The children were young (mean age 6) and some had severe autism, so they had to be sedated, held down by adults, etc. His "informed consent" form does not describe the risks. https://www.youtube.com/watch?v=8BIcAZxFfrc&t=1h7m17s https://www.youtube.com/watch?v=8BIcAZxFfrc&t=1h7m17s (Where was the IRB during all this? Good question.)
  - ben_w 5y ago
    I was already in agreement that he sucks, but that doesn’t actually tell me he committed an offence under section Foo of the Perfectly Sensible Yet Obscure Medical Consent Act 1869 or whatever, so I don’t know if legally speaking he ought to have been locked up.

nmstoker 5y ago

They will get clobbered by the ICO as it's clear this was neither informed consent nor was the data retention period reasonable. Burying terms of such significance results in unenforceable agreements, so it's naive (but not unexpected) of Cignpost to come out saying they are in full compliance with data protection laws. I would urge anyone potentially impacted to write to the ICO to register their concerns.

Mezzie 5y ago

The particularly shitty part is that often people are/were REQUIRED to test themselves for COVID and people were stuck with whatever tests were available. So governments demanded people buy goods from private companies, and then the private companies abused their customers. It's like a giant shining example of why we're quickly becoming no-trust societies. When I give my blood and DNA for MS trials, I get long consent forms and details, which I can alter. (I always cross out the parts that enable my data to be used for profit; if they want to know why I have benign MS, I hope they figure it out, but I want them to use my information to help people, not gouge them.)