This is the seventh article in Keep Health’s series on Setting Your Health Baseline, so you can measure whether your health is improving or not. It covers the All of Us Research Program, a National Institute of Health (NIH) initiative to build one of the most diverse health databases in history. You can participate and receive a free analysis of your DNA along with other benefits.
The first article in the series provided The Basics of Setting Your Health Baseline. Additional articles reviewed the offerings of specific providers of Health Baseline services such as Human Longevity and Viome as well as biological age tests.
Background
The US government has funded public health research studies for many years. One of the most famous studies was the Framingham Heart Study which has followed over 5,000 residents of Framingham, Massachusetts since 1948. It has produced major findings on the negative impact of cigarette smoking, high blood pressure and high cholesterol on health. These may seem common knowledge now, but were new insights at the time of discovery.
In 2018, the NIH launched All of Us to follow the health of 1 million US residents over the age of 18 for at least ten years. They have several worthy goals to:
- Enable personalized precision medicine, discovering the links between individual DNA and health conditions for the purpose of treating and preventing disease.
- Provide you with better information to stay healthier.
- Reduce the cost of the US healthcare system by matching the right person with the right treatment the first time.
All of Us Participation
All of Us participants volunteer to provide blood, urine and saliva samples as well as to complete semi-regular online health surveys. Researchers use the data to learn how personal biology, lifestyle, and environment affect health.
In return, participants may elect to receive discoveries about their DNA including:
- Whether you have known risk factors for dangerous diseases, continuously updated as research improves over time.
- Your ancestry.
- Traits linked to specific genes such as why you might love or hate cilantro.
Of note, All of Us does not provide you with access to your whole DNA sequencing results. They only provide you the option to know about specific issues which could significantly impact your health.
All of Us Registration
Participants sign up at All of Us online here. It is a 1-1.5 hour process which involves completing:
- Account setup security questions (2-3 minutes)
- Video tutorials on the responsibilities and risks of study participants (20-30 minutes)
- Electronic consent forms (2-3 minutes)
- Surveys on personal health information (30-60 minutes)
All of Us uses strict government security protocols to protect your health information with a commitment to prevent misuse and protect your confidentiality. Your data is anonymized. It will not be used by health insurers, law enforcement, etc.
That said, and most ironically, All of Us is not able to serve those in jail or prisons at this time.
All of Us Post-Registration
You’ll receive an email on how to schedule your appointment to provide blood, urine and saliva samples at a facility nearest you. You’ll show up and provide the above. All of Us staff are generally quite friendly and appreciative for your participation.
Understanding Your Results
The All of Us program will not provide you with results from your tests unless you consent to receive them. They are very careful with this.
If you do elect to receive results, they will notify you by mail if they find any dangerous genetic anomalies. You will then be asked a second time if you want to receive them. Your information will initially be provided by a phone call with a caring staff person who can explain your results and their implications as well as in writing.
You will be given the choice of having your results shared with your primary care physician.
Your ancestry and trait information will be offered to be shared with you through the online portal. It is rather fascinating and you will be asked to confirm how strongly you believe each part of their analysis is correct or incorrect.
If you have more questions about All of Us, answers are hopefully in their FAQ.
Potential Concerns
- If you don’t trust the NIH with having your health data, then this program is not for you.
- If you so choose to see your test results, you may discover you have or are at risk for dangerous diseases. Some people may not want to know this.
Alternatives
Commercial companies appear to offer similar services from $59-99, however they are not as thorough in their scientific rigor, scanning only small subsets of your DNA. Also, they own your DNA and often sell it for commercial purposes. They can be compelled by law to provide your DNA to see if it matches that found at crime scenes which could implicate you, your kin, or your relatives. If instead, you would like to pay to get your DNA sequenced from a commercial provider, Nebula Genomics offers 30x Whole Genome Sequencing for $299 and provides you with full access to your results. Also, Nebula doesn’t sell your information and provides privacy protection accessible only by you. For more provider options and background, see our article on whole genome sequencing.
Conclusion
Thanks for reading. To reward yourself for caring about your health, please join All of Us!
Once you get through the initial sign-up and biological sample providing processes, you’ll be glad you did. This study, like the Framingham Heart Study, will lead to better health outcomes for all of us. It is worth a few hours of your time.
