All of Us - a research initiative

Kawa shared a link said Thu, May 10th 2018 at 4:02pm ET

A research group is trying to get a large cohort health study going, and needs a million participants at all ages, walks of life, health levels, and parts of the US. (Sorry, non-Americans.) They’ll pay for any labwork they ask for, and your genome might end up sequenced, which is kinda neat.

https://www.joinallofus.org/en/who-can-join

6 comments, 7 replies
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therealjrn said Thu, May 10th 2018 at 4:24pm ET:

Looks very interesting. I’ll have to read up on what they want with my data.

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- @therealjrn clones. Clearly the only reason.
  
  Targaryen said Fri, May 11th 2018 at 9:24am ET
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mehcuda67 said Thu, May 10th 2018 at 6:07pm ET:

/giphy genome slicing

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Cerridwyn said Thu, May 10th 2018 at 10:25pm ET:

Having been involved in health care all my adult life and a lot of it working for places that do high end research, I’d be leary for one reason - they don’t tell you a thing about who’s behind it - has to be big money. and who these ‘experts’ are.

Legitimate research is up front about both of these.

Harvard has been doing massive longitudinal health studies for years, and you always know the who - because that’s the first important question to ask.

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- @Cerridwyn The Who’s involved page seems to go into it, though it’s not totally clear that the section headers are actually links to more information. https://www.joinallofus.org/en/who-is-involved
  
  It just mainly see,s like the point is to create a huge database of people willing to take part in health studies, rather than just hiring the nearest college kid.
  
  aristan said Thu, May 10th 2018 at 10:40pm ET
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- @Cerridwyn Not sure if this fully answers your question, but this is from the FAQs.
  
  Who runs the All of Us Research Program?Close
  The National Institutes of Health (NIH) runs the All of Us Research Program. There are many groups helping NIH. There is a Data and Research Center that stores the information you contribute. There is a biobank that stores samples. There is a Participant Technology Systems Center that creates tools for you to connect with us online. There is a Participant Center and numerous health care organizations that are working with us to help you sign up. Learn more about our partners on our website:
  https://www.nih.gov/AllofUs-research-program/program-components
  
  PurplePawprints said Thu, May 10th 2018 at 10:50pm ET
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- Here is more information
  
  https://www.wired.com/story/all-of-us-launches?mbid=social_twitter_onsiteshare
  
  Looks like it is credible - NIH sponsored. Paid for by congress.
  
  Kidsandliz said Thu, May 10th 2018 at 10:52pm ET
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- @PurplePawprints Well you beat me to it by a few seconds…
  
  Kidsandliz said Thu, May 10th 2018 at 10:53pm ET
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- @Cerridwyn Went and created an account - looks like some major medical centers are involved. Their release forms list researchers at places like Vanderbilt, Mayo, U of TX system, etc. IRB approval is listed, etc. Poking around it looks above board and involves top tier medical centers.
  
  Kidsandliz said Thu, May 10th 2018 at 11:21pm ET
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RiotDemon said Fri, May 11th 2018 at 11:33am ET:

Seems interesting.

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katylava said Fri, May 11th 2018 at 11:43am ET:

I want to join, but what are the risks of giving the government my health data? I can’t really think of any, unless they decide to lock up people with a specific gene.

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- @katylava What could possibly go wrong?
  
  therealjrn said Fri, May 11th 2018 at 11:44am ET
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msklzannie said Fri, May 11th 2018 at 12:30pm ET:

There are no participating hospitals in my state. Closest seem to be Mayo, Chicago, or Wisconsin.

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