NIH’s All of Us Research Program officially launched on Sunday, May 6th. It’s an ambitious national effort to bring together at least one million people from across the U.S. in a long-term study of health across the lifespan. All of Us is not just a biobank or a genetic study. It’s a 360-degree view of health and disease, with just as much attention to environment as genetics and just as much attention to resilience as to vulnerability.
Our Mental Health Research Network has several connections to the All of Us program. Henry Ford Health System and Baylor Scott & White Health are participating as health system partners. Brian Ahmedani co-leads one of the health system networks. I serve on the external advisory panel.
All of Us has been building toward this launch for more than a year. A wide range of patient and community organizations have participated in every stage of planning. Innovative communication tools were developed to make sure that informed consent is truly informed (and not just “a form”). Online surveys and mobile apps have been tested and refined to make them both accessible and secure. The pilot phase enrolled over 27,000 participants, and over two-thirds of them were from groups traditionally under-represented in biomedical research.
With all of that preparation complete, it’s an unfortunate coincidence that All of Us launches following a series of news stories about threats to privacy, including harvesting of Facebook data and law enforcement use genealogy websites. Of course, none of those events are directly relevant to participating in All of Us.
This last year of preparation has focused on avoiding events like those. That time was spent on extensive testing of information security, learning to communicate clearly and effectively about data privacy, and listening to potential participants about appropriate and inappropriate uses of their health and genetic information. Participants’ private information has special legal protection through a Certificate of Confidentiality. Leaders of the program are not naïve, so they are very thorough.
Knowing what I know, those recent news stories won’t deter me from joining the All of Us program as soon as I can. I will complete the baseline survey and share my medical records. I’ll contribute my blood samples when there’s a collection site close to me, and I’ll download the All of Us mobile app. I may not directly gain by participating, but I’m confident I have nothing to lose. I might actually have something useful to share, but no one will know unless I share it with All of Us.