Contact All of Us Research Program Support

Unfortunately both the app and the program have issues. The app is still not completely syncing with HealthKit. The notifications I get in the app are not all the same as I get by email. As others have said, why are there two apps? More information on DNA results would be good. It has been 6 months and only some results are there (others who sent I after me have gotten more data). Link from within the app don’t always work. I signed up to link an external provider. Two weeks later I am still getting a still syncing message. And why is there such a limited number of providers you can link to? Why number major labs and drug stores? And the biggie that makes me question the program. I got major web site issues (links not working, cryptic messages, etc) when attempting to sign up for local blood work. I have sent emails to help/support twice in the last three weeks and still waiting for a response. I tried online chat and it was obviously they knew nothing about the program. I REALLY like the idea of the project. I have participated in several research programs that are very time consuming and feel we all owe to help out research when we can. But some of these issues make me question this program and their commitment to follow through on the project.

When I joined AllofUs, I thought it would be a win-win…I would help the project with medical discoveries and I would learn information that may significantly improve my health. I have many medical diagnoses. The genetic data that they have provided back to me is lame trait information such as ancestry locations (entirely misses my arctic and native ancestry),bitter taste perception, ear wax type, cilantro taste preference, lactose intolerance (basically things that I already know from lived experience). All in all, this is trait information that cannot help me improve my wellness. While I have not removed myself from the project, I will no longer advocate participation until I see evidence that they have a commitment to meaningful sharing of medical genetic information.

I was clearly lied to in order to get me to participate. I was lied to by the recruiter and during my donation, I was lied to by the individual who took my samples. I was told I would receive my complete gene report within 6-9 months of donating. This is the reason why I chose to participate. I was also told upon arrival I would receive my complete report in approximately 6 months. Obviously your recruiters and staff are incentivized to lie and greatly exaggerate or the program manager may be lying to staff members. The program lacks integrity. How can anything else be trusted