All of Us Needs All of You
Posted on 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.
Links:
Video: What is All of Us?
Video: We are Jackson, Mississippi
Video: We are Chicago’s Asian Community
Video: We are Tennessee’s Appalachian Roots
Video: We are Bay Area’s Hispanic Community
Pay it forward: Join with All of Us Research Program to build a healthier future. Alex M. Azar II and Francis S. Collins, USA Today, May 7, 2018.
All of Us Research Program (NIH)
NIH Support: NIH Office of the Director
Can we contribute our DNA sequencing data from genealogy services (e.g. National Geographic, Ancestry) to this effort? If not, why not?
The quick answer is no. All of Us plans to do whole genome sequencing of participants’ samples—a more comprehensive kind of analysis than many direct-to-consumer companies now offer. To make the samples most useful for research, All of Us will collect and analyze them in a standardized way. I should note that All of Us will also share more information about the program’s genomic component as plans develop. To receive updates, you can subscribe to the All of Us newsletter at https://www.JoinAllofUs.org/. Thank you for your interest!
YES!! I don’t have a problem with this because it can benefit lots of people everywhere.
Direct lineal descendants.
Are you kidding me, Dr. Collins?! “…the most advanced security available…”??? Foreign governments (read Russia) and hackers from around the world have stripped “the most advanced security available” USA databases with impunity from both high level government and private companies. And you think the NIH can do better??! Sorry, doesn’t fly.
I am well educated, mature without being “age-ed”, politically moderate and don’t have a penchant for conspiracy theories so I’m not a 3 sigma person. I like to think I’m close to the demographic median in many things. But giving a government agency my private medical files is just not going to happen. Apple, Xfinity and Facebook were going to protect my data with their very corporate life and we see where that went. If I do a product search online within half an hour I start getting ads on that subject and related subjects on my computer.
Power (and massive personal databases is power) breeds corruption no matter how altruistic the original objectives. History and recent events make that very clear.
Respectfully
Aaaaand enter 2020 and we see where that went.
I joined all of us because it is a need to have this kind of science. It’s who we are giving it to is the concern, clearly. I realize someone made a point about security. Security in the U.S. sucks right now… period. Especially with widely accessed internet and no form of neutrality. Regardless, now is the time and fear is the only thing holding us back. We can’t live in fear and not progress or we will forever be stuck. There are other things we need to look into to make are concerns less and making sure the allofus campaign is held accountable for our security is important. But understand this type of funding for this many people is of overwhelming value to the U.S. and the world.
I signed up! I want to help advance medical research and maybe learn more about how to improve my own health. Hope all goes well.
The U.S National Institutes of Health and the UK Wellcome Trust, in partnership with the African Society for Human Genetics (AfSHG) embarked on an ambitious project (the Human Health and Heredity in Africa, or simply put H3Africa Consortium) to decipher the generic and environmental determinants of disease among African people. We have made tremendous headway, and truthfully speaking, issues of data and biospecimen safety were present with us. But with an extensive body of experts, we have managed to maneuver our way out (the future will tell whether successfully) of the Ethics, Legal, and Social Implications (ELSI) of sharing ones genomic data. Rather than hinder the progress of science out of a fear for personal safety, we opted to give to the greater cause of advancing not only African peoples health, but that of humanity as a whole. That is because, if the Caucasian genome is white light, then the African genome is white light that has been split into all its rainbow colors by a prism. This extensive heterogeneity, we understood is key to understanding genomics data from all humanity and ultimately, advancing precision medicine. I think that through the All of us Resource, the American People have a great opportunity to contribute towards the future of what we only have a vague picture of–what medicine will be like 100 years from here. We should not be the ones that stand in the way of these advances, much as they might benefit our generation only a little. Our children and grandchildren will certainly be grateful.
I joined the “all of us” research program yesterday by filling out the extensive registration form. I received an email today that said I had to be using a “Community Healthcare Center” as a “direct volunteer.” When I looked for CHCs in Connecticut, I found that there are no CHCs in the eastern half of CT. I have used Day Kimball Hospital in Putnam CT for blood tests. Does this mean that I can’t be a part of this “All of Us ” program if I don’t use a CHC as I have been told?
Thanks so much for joining! All of Us partnered with a set of clinics and medical centers to help enroll participants around the country, but you don’t have to receive care at one of those sites (or have a health care provider at all) to join the program. People ages 18 and up may sign up online at JoinAllofUs.org. If you have specific questions about your participation or partners in your area, please contact the All of Us Support Center for assistance at help@joinallofus.org or (844) 842-2855. Thanks!
Thanks, Moderator, The people answering my email and phone call are giving confusing answers to my question that could prevent accumulating registrants. There’s a language problem.
I am a strong believer in the importance of medical research. I haveparticipted in studies related to lung disease and to Alzheimer’s. And, I would like to participate in this study. I was about to sign the consent form when I started to think about the sad state of affairs with our national government today. And, I began to wonder whether/how this data could be used for negative, racist, nefarious purposes. How can I be sure that the data will NOT be used for improper purposes like looking for ways to hurt various groups or prevent access to needed care?
Elissa, thanks for the question and for supporting medical research! We’ve designed this program to serve as a broad resource to support research studies on a wide range of health topics. It’s up to researchers to decide what topic they wish to study. That said, here are a few more things you should know: researchers seeking access to the data will have to register with the program, agree to a code of conduct, and take bioethics training. They’ll also have to provide a description of their study for us to post online, to keep the public informed about how All of Us data is being used. If researchers don’t abide by All of Us policies, they may be barred from future access to the data. We take ethics very seriously, and incorporate participant representatives in our institutional review board, Resource Access Committee, and governance to make sure that participants’ opinions, feelings, and perspectives guide our work. We understand and respect that the decision whether or not to join All of Us—or any research program—is a personal one. Whatever you choose, thanks for your interest and for getting in touch. I hope this information is helpful!
I have completed the questions about drug and alcohol use. The submit button is not working. Let me know what to do so that I can continue.
Sorry to hear about the problem. Please feel free to contact the All of Us Support Center for assistance – help@joinallofus.org or (844) 842-2855. Thanks!
WOW!!! After leaving my reply, I read all the other replies and realized I made a knee jerk reaction reply. Didn’t think about security, etc.