All of Us: The Details
Before I go further, I want you to consider this. For every variable, there will be a million data points. Height: one million. Weight: one million. Hip circumference: one million. You get the idea—and this is the simple stuff. The blood work alone could have 100 variables. Then we get into the DNA. Every gene has to be mapped to examine specific areas of DNA to see similarities or differences between healthy people and those with diseases.
If you volunteer, you will be called a partner instead of a subject. You’ll be giving the study plenty of information, but the information doesn’t just go one way. In the future, when there’s something that can benefit your health, you may be given information critical to preventing or treating a disease. The data collection includes giving Informed Consent and HIPAA for electronic data collection. Then there are several surveys and perhaps more in the future. There will also be blood and urine specimens as well as some baseline anthropomorphic data.
One thing that’s on everyone’s mind is information security. The researchers go into great detail to protect your identity. Data will be posted only with a number instead of a name, and the highest level of encryption available today will be used to protect your identity. I take security seriously, and I’m comfortable with it.
Check out the link in the Reference to find out more, and if you choose, to get started now yourself.
What are you prepared to do today?
Dr. Chet
Reference: https://allofus.nih.gov/