Buzz
The National Institutes of Health is seeking one million volunteers to contribute their health information for a comprehensive, long-term study. “The next major discovery lies within each of us,” states an advertisement targeting potential participants, “and what we uncover will solve mysteries, cure illnesses, and eliminate diseases.”
In reality, the study's outcomes remain unknown, which is precisely why it’s being conducted. Robust health research requires a large pool of participants to ensure reliable conclusions. While previous studies have utilized over a million data points, these often came from hospital records or census information. Here, the NIH aims to gather one million individuals who agree to join the research database and participate in various forms of data collection, such as providing blood, urine, or saliva samples and granting access to medical records. The initiative also plans to sequence the complete genomes of participants.
In reality, the study's outcomes remain unknown, which is precisely why it’s being conducted.
A study involving one million participants doesn’t represent “all of us,” but it does account for a third of a percent of the nation’s population, which is significant. The researchers are striving to recruit a diverse sample, though the database may still lean toward individuals who are aware of the study, willing to participate, and feel secure doing so—potentially limiting its representativeness. However, efforts are being made to include groups traditionally underrepresented in medical research. Success in this endeavor would mark a substantial advancement for the field.
How You’d Benefit
The website where you sign up for the study doesn’t mention any compensation for participation, unlike smaller studies that sometimes offer payment. Instead, the primary benefit is knowing your data contributes to scientific research. (This is reflected in the dramatic promotional material, featuring statements like: “When called upon to give from within, [Americans] unite and discover that their ability to assist others knows no bounds.”)
Participants also gain access to the data collected about them, which may include their genome sequence or other genetic information. Additionally, you’ll receive updates on published findings, such as scientific papers, resulting from the All of Us study.
While the researchers aim to solve various health-related mysteries over time, the benefits aren’t directly personal. This initiative isn’t a form of medical care, nor is it designed to address your specific health issues. Instead, your participation serves as a data point to help researchers understand how healthcare can be personalized in the future.
Who Can Participate
To ensure the data sample accurately reflects the entire nation, researchers aim to include everyone. They are conducting outreach in multiple languages and seeking participants from all ethnic backgrounds, health conditions, and more. Currently, the only individuals excluded are those under 18, incarcerated, or unable to provide independent consent. They also state: “In the future, we hope to include these groups.”
Health insurance or financial resources are not required (the study covers necessary visits and lab work, though not transportation or childcare). Access to a computer or mobile device is helpful but not mandatory. Additionally, English proficiency isn’t necessary; they currently offer Spanish translations and materials, with plans to expand to other languages soon.
What Do They Want From Me?
All of Us collects your name when you sign the research consent form and agree to join the study. (Prior to this, you must create an account, so they already have your email address and chosen password.)
According to the privacy policy, here’s the data they request through the website or app. Some of it is optional; you can choose not to provide this information and still participate in the study.
Responses to survey questions. “We will inquire about your health, family, home, and work. You are not obligated to answer any question you prefer to skip.” Initially, you’ll spend 30 to 60 minutes completing the survey, but additional questions may be asked later.
Fitness tracker information. “For instance, we might request you to complete a brief walking activity. Data on your walking distance, collected from your smartphone or fitness tracker, will be imported into the All of Us app.” This is optional.
Location information. “This helps us gauge your activity levels. We do not track your exact location, only the distance you travel.” This is optional.
The privacy policy doesn’t explicitly state it, but the website also requests security questions during sign-up. These range from potentially revealing questions like, “What was the house number and street name where you lived as a child?” to highly sensitive ones such as, “What are the last five digits of your driver’s license number?” Additionally, they ask for details like your state of residence and where you primarily receive healthcare as part of the consent process.
Thankfully, the consent process isn’t just a lengthy document of fine print. It includes a series of short video tutorials explaining each type of data the researchers aim to collect and the reasons behind it. These cover:
Your contact details, along with a phone number or email for a close friend or relative who can assist in locating you if necessary. They also mention they “might use social media or public databases to keep your contact information current.”
Records from past healthcare visits, which may include procedures, illnesses, test results, medications, and more. (“Your health records may contain sensitive information, such as mental health history, alcohol or drug use, or sexual health details, including HIV status.”) If you choose not to share your health records, you may be excluded from certain study components, like providing blood samples or body measurements.
Your blood, urine, and saliva. Samples will be stored in a specialized facility, accessible to researchers upon request. It’s possible that your samples could be fully utilized, prompting a request for additional donations.
Your DNA, extracted from the provided samples.
Body measurements, including height, weight, blood pressure, and waist size. (This requires a 15-minute in-person appointment.)
Data obtained from external sources. For example, they might access pollution data for your city or request your pharmacy records.
What Happens to Your Data
If 2018 had a defining theme, it would likely be Your Data Is Never Secure, making it a challenging moment for a study that seeks to gather vast amounts of data from countless individuals while expecting us to feel patriotic and generous about it.
Thankfully, the researchers have considered this issue and even secured legal protections, as reported by Wired. While the safest option is always to avoid sharing any information, if you decide to participate, All of Us commits to safeguarding your data in several ways.
First, the website separates your data from easily identifiable details like your name and email address. Researchers will access your data using a code number instead of your name. However, even without your name, the information is highly detailed. “Even without your name, there’s a possibility someone could identify you,” the privacy policy cautions, accurately. “They could misuse your information. We believe the risk is minimal, but it’s not zero.”
The study website also employs end-to-end encryption for data transmission, making it extremely difficult for hackers to intercept. Additionally, they claim to have rigorously vetted the technical team with access to sensitive information.
According to Wired, here’s how the data will be shared with researchers and the public:
Access to the project’s information will be available to everyone, but it will be tiered based on sensitivity. General inquiries about the overall demographics of the All of Us group—data with minimal reidentification risk—will be publicly accessible. More sensitive data will have stricter controls: some will be accessible to citizen scientists collaborating with research organizations, while others will be restricted to researchers trained in human subject studies who have pledged not to link deidentified health data with personal identifiers like names, addresses, or social security numbers.
Thanks to a provision in the 21st Century Cures Act, this study (and others like it) holds a Certificate of Confidentiality, safeguarding participants’ data from disclosure, including most law enforcement requests:
Disclosure is only allowed when: … Mandated by Federal, State, or local laws (e.g., under the Federal Food, Drug, and Cosmetic Act, or state laws requiring the reporting of communicable diseases to health departments), excluding disclosures in any Federal, State, or local civil, criminal, administrative, legislative, or other proceedings;
What If I Change My Mind?
You have the right to decline any request or withdraw from the study at any time, which is standard practice in research. For instance, if you arrive for body measurements but decide against being weighed, no one will compel you to step on the scale.
Given that the study will span at least a decade, it’s possible that new methods for analyzing DNA or utilizing the study’s data—currently beyond our imagination—could emerge. Unlike most research studies, you can’t fully anticipate what you’re agreeing to. You’re essentially providing your data with the hope that it will be used for beneficial purposes rather than harmful ones.
Once you enroll, you have the option to withdraw from the study at any time, and no further information will be collected from you. However, if your data has already been shared with researchers, it cannot be retrieved. For questions, including those about privacy, you can contact the study at [email protected] or 1-844-842-2855.
