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GidMK's profile
Health Nerd
Health Nerd
Health Nerd
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@GidMK

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Health NerdVerified account

@GidMK

Epidemiologist. Writer (Guardian, Observer etc). "Well known research trouble-maker". PhDing at @UoW Host of @senscipod Email gidmk.healthnerd@gmail.com he/him

Sydney, New South Wales
theguardian.com/profile/gideon…
Joined November 2015

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    1. Darren Dahly, PhD‏ @statsepi 13 Mar 2019
      Replying to @ATorkamani @cecilejanssens @dahinds

      I accept that people can have different sensitivities when it comes to foisting unproven interventions on an unsuspecting public. I'm guessing yours is "but there's a white paper". Noted.

      1 reply 0 retweets 0 likes
    2. Cecile Janssens‏ @cecilejanssens 13 Mar 2019
      Replying to @statsepi @ATorkamani @dahinds

      I find this shocking. Noted here too. I want to believe that you don't mean it, Ali, but it's consistent with everything you about DTC, so I am afraid you do. Don't forget that most people buy a test because they trust the provider, not because they understand the specs.

      2 replies 2 retweets 7 likes
    3. Ali Torkamani‏ @ATorkamani 13 Mar 2019
      Replying to @cecilejanssens @statsepi @dahinds

      I find it shocking that you think it is acceptable to police access to information. That's what marketing guidelines are for. Lack of utility to a sub-group (even a large sub-group) is not justification to stop the flow of information completely.

      2 replies 0 retweets 0 likes
    4. Ali Torkamani‏ @ATorkamani 13 Mar 2019
      Replying to @ATorkamani @cecilejanssens and

      I also would be totally opposed to selective access to information on the basis of genetic ancestry. We should never set that precedent. Informed decision-making on the part of the consumer is the only acceptable recourse imo.

      1 reply 0 retweets 1 like
    5. Ali Torkamani‏ @ATorkamani 13 Mar 2019
      Replying to @ATorkamani @cecilejanssens and

      I think we are more or less in agreement on the limitations of the score. But not in agreement on what that means for access to the score. I would, in general, favor freedom of access information of any sort - not only genetic info - if it is desired.

      3 replies 0 retweets 1 like
    6. Cecile Janssens‏ @cecilejanssens 13 Mar 2019
      Replying to @ATorkamani @statsepi @dahinds

      Based on what you have written about PRS, I don't think we agree on the limitations. I am also pro free market, pro access to information, etc, etc, but also pro quality standards, not only for the genotyping (which is peanuts) but for the modeling and assessment.

      0 replies 0 retweets 0 likes
    7. This Tweet is unavailable.
    8. Cecile Janssens‏ @cecilejanssens 13 Mar 2019
      Replying to @ATorkamani @statsepi @dahinds

      I am not talking about utility, but if I had: Assuming that people truly understand what the test can tell them (is a high bar), then: - this T2D PRS is unlikely useful for anyone - this T2D PRS is not useful for indivs that **DON'T** resemble 23andme customer base

      1 reply 0 retweets 0 likes
    9. Ali Torkamani‏ @ATorkamani 13 Mar 2019
      Replying to @cecilejanssens @statsepi @dahinds

      (Repost) Let me attempt to restate your stance then on this particular score. The T2D PRS is not useful if you are aware that you have high environmental risk. The T2D PRS is probably not useful for individuals that don't resemble the majority of the 23andMe userbase.

      1 reply 0 retweets 0 likes
    10. Ali Torkamani‏ @ATorkamani 13 Mar 2019
      Replying to @ATorkamani @cecilejanssens and

      Well - I guess we disagree on "unlikely useful for ***anyone***" If you are healthy, (near)European and you fall in the highest risk tier - 2X increase risk even with the relatively low incidence in healthy individuals is meaningful and worth investigating.

      2 replies 0 retweets 1 like
      Health Nerd‏Verified account @GidMK 13 Mar 2019
      Replying to @ATorkamani @cecilejanssens and

      So, presumably, the test should only ever be sold and marketed to people who meet those fairly exacting criteria, if at all?

      1:44 PM - 13 Mar 2019
      1 reply 0 retweets 0 likes
        1. New conversation
        2. Ali Torkamani‏ @ATorkamani 13 Mar 2019
          Replying to @GidMK @cecilejanssens and

          No - that is the group that the score is *most* useful for. It's a personal value judgement for the individual. Although yes - I would say on the marketing side it should be clear how well the test would perform across various groups - which is exactly what was done.

          1 reply 0 retweets 0 likes
        3. Health Nerd‏Verified account @GidMK 13 Mar 2019
          Replying to @ATorkamani @cecilejanssens and

          But what you're saying is that in the best case scenario the test - for people who are low on every other risk, resemble 23andMe userbase, and score in the highest risk tier - will inform people of a risk increase of, what, about 0.05%? Roughly?

          2 replies 0 retweets 0 likes
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