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Thread: All of Us Research Project now accepting participants137 days old

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    Default All of Us Research Project now accepting participants

    The National Institute of Health has now launched a massive genome-wide association study to find the genetic (and epigenetic?) link of every health problem in the next ten years. It aims to be the biggest such study in the world, with at least a million American participants. I predict that the knowledge spilling out of this study will be beyond mere health. It will identify the genes that code for educational attainment and drug abuse. And, phenotypes among races, classes and sexes will be genotypes.

    They are now looking for participants. Below is a plea to join by Francis Collins, published two days ago.

    https://directorsblog.nih.gov/2018/0...ds-all-of-you/

    All of Us Needs All of You
    Posted on May 7th, 2018 by Dr. Francis Collins

    I’ve got some exciting news to share with you: as of May 6, 2018, NIH’s All of Us Research Program is open to everyone living in the United States, age 18 and older. That means that you, along with your family and friends, can join with 1 million or more Americans from all walks of life to create an unprecedented research resource that will speed biomedical breakthroughs and transform medicine.

    To launch this historic undertaking, All of Us yesterday held community events at seven sites across the nation, from Alabama to Washington state. I took part in an inspiring gathering at the Abyssinian Baptist Church in New York’s Harlem neighborhood, where I listened to community members talk about how important it is for everyone to be able to take part in this research. I shared information on how All of Us will help researchers devise new ways of improving the health of everyone in this great nation.

    Today, much of our medical care is “one-size-fits-all,” not tailored to the specific needs of the individual patient. If we are to make the biomedical breakthroughs necessary to realize the full promise of precision medicine, researchers need a lot more data that takes into account individual differences in lifestyle, environment, and biology. Such data will be hard to assemble unless lots of people like you come together through the All of Us program and volunteer to share information about their health, habits, and what it’s like where they live.

    To create the All of Us research resource, participants will provide health information over time by completing surveys, sharing their health records, providing blood and urine samples, and perhaps even by putting on wearable sensors. All of these activities will involve the most advanced security available to protect everyone’s data and ensure everyone’s privacy.

    I also want to assure you that every person who signs up for All of Us will be a true partner with NIH in this pioneering effort. Participation in All of Us will be a two-way street: each volunteer will receive copies of all the information that research program has collected about him or her. In fact, the longer you take part in All of Us, the more you’ll learn about your health and the various steps you might be able to take to improve it.

    Interested? Here’s how you sign up. Go to the All of Us website, click the “Join Now” button, and follow the three easy steps. First, create an account. It’s free and takes just a minute or two. Next, complete the enrollment and consent forms. That usually takes 30 minutes or less. Then, complete some baseline surveys and find out what to do next.

    To help inform your decision, I’m providing a few links below to videos that explain more about All of Us and showcase some of the diverse communities taking part in the effort. And, over the course of this work week, I will post additional videos here that highlight various aspects of All of Us.

    By now, you are probably wondering if I will be signing up for All of Us. Yes, I just did! So, I ask you to consider joining me—and the many, many other Americans who are volunteering for All of Us—in building the foundation for a new era of precision medicine, both for current and future generations.

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    Interesting. How do they intend to carry out this study? I mean, will they genome-wide test everyone or can we just send in our raw 23andMe data, what's the deal here?
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    Quote Originally Posted by EliasAlucard View Post
    Interesting. How do they intend to carry out this study? I mean, will they genome-wide test everyone or can we just send in our raw 23andMe data, what's the deal here?
    All over the United States they will hire clinicians to collect blood and urine samples and take measurements. It will take about 15 minutes for each person. I am not sure what the incentives are aside from a generosity high. I expect they will need like a cash reward to get a million people to do this.

    - - - Updated - - -

    I formally signed up. In the process of joining, I read the "Consent to Join," which was NOT written in confusing legal language, but it was designed to be brief and comprehensible. I like that. Here is the paragraph that interests me the most:

    "Researchers will use basic facts like your race, ethnic group, and sex in
    their studies. This data helps researchers learn if the things that affect
    health are the same in different groups of people. These studies could one
    day help people of the same race, ethnic group, or sex as you. However,
    there is a risk that others could use this data to support harmful ideas about
    groups."

    So, they are fully conscious that racists will use this data to prove that group phenotype is group genotype. I have been sounding that alarm for two years. After I read that, I expected that they changed their minds and decided NOT to collect data about educational level. But my mistake, as that question was included in the first questionnaire! Maybe they still don't fully realize what a bag of monkeys this is.

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