[HN Gopher] Listening and building trust: starting as I mean to ...
       ___________________________________________________________________
        
       Listening and building trust: starting as I mean to go on
        
       Author : DanBC
       Score  : 8 points
       Date   : 2021-04-11 08:48 UTC (14 hours ago)
        
 (HTM) web link (www.gov.uk)
 (TXT) w3m dump (www.gov.uk)
        
       | DanBC wrote:
       | A few people on HN want to use health care data from people in
       | England. Understanding Dr Nicola Byrne's aims and concerns will
       | be useful to help predict what policies and laws around
       | healthcare data are going to be implemented.
        
       | motohagiography wrote:
       | Consider whether affiliated people on Twitter are the sort of
       | people you'd feel comfortable being able to anonymously browse
       | your medical history without any log of the action because it was
       | classified as research on a data set. Researchers are people like
       | anyone else, except they're just as awful, with more access,
       | fewer adult incentives and boundaries, and almost no personal
       | accountability for privacy. If you have doubts about whether you
       | would trust U.S. college IT people to run facebook, pornhub,
       | reddit, or tinder on your behalf, I recommend paying attention to
       | what this new national data guardian has to say.
       | 
       | The risk I think she will need to manage is the pressure
       | universities apply to health agencies for data. There is a
       | perfect storm brewing where privacy for outsiders isn't a big
       | cultural norm in some reserach communities, but using data for
       | social political purposes is. Reserach ethics boards are nice,
       | but they're like the police investigating themseves.
       | 
       | The question isn't so much whether we could cure cancer with just
       | this bit more data without oversight, and more whether the people
       | demanding it are above using a perceived crisis to squeeze the
       | toothpaste out of the tube. She has a very interesting job ahead
       | of her.
        
         | antxxxx wrote:
         | There are strict guidelines about what data can be shared for
         | research purposes and researchers only get access to the data
         | they need - not your full medical history. Access is audited
         | and you can request information on where and for what purposes
         | your data is shared. You can also easily opt out of your data
         | being shared for research purposes.
        
           | motohagiography wrote:
           | Depends on what jurisdiction, and if you are familiar with
           | privacy law in different regions, the exceptions to that are
           | often sweeping, with the additional issue in some systems
           | that regulations can be made by lower level authorities
           | without the same level of public scrutiny or debate.
           | 
           | It's the wild west for data, and privacy people have done
           | what they could over the last 20 years, but the tech has
           | accelerated so much in the last 10 that those prior
           | assurances aren't what we think they are.
        
             | antxxxx wrote:
             | All health and social care organizations in England must
             | comply with this by September 2021 (delayed from original
             | date due to the pandemic). This was based on a
             | recommendation from the previous National Data Guardian.
             | 
             | Scotland, Wales and Northern Ireland have different
             | policies.
        
       | cvlpx wrote:
       | This sounds like a sugarcoated "all your data are belong to us"
       | with the usual chatter about "innovation".
       | 
       | I'd trust them if they offered this position to someone like
       | Schneier.
        
       ___________________________________________________________________
       (page generated 2021-04-11 23:01 UTC)