The All of Us Research Program is inviting one million people across the U.S. to help build one of the most diverse health databases in history. We welcome participants from all backgrounds. Researchers will use the data to learn how our biology, lifestyle, and environment affect health. This may one day help them find ways to treat and prevent disease.
Anyone participating? Good/Bad idea?
That’s a no from me. Databases are not secure. I’m not a fan of electronic medical records in any setting because cyber security is never a top priority, they simply give lip service first and ask forgiveness later.
I think it’s a great idea. The Nurses Health Study has been really valuable and I think this study will just follow on that and open it up a little more.
I have not thought about participating in this, but I have participated in some studies in the past with no problem.
I hadn’t heard of it, but I’d be open to it. Studies, esp massive studies, help knowledge considerably.
I’ve also been in smaller studies with no issues.
In order to maintain my anonymity on this site, I won’t give specifics except to say that a close family member is very prominently employed on this project at NIH. This person has asked us to participate and I was all set to and then I read “The Circle” by Dave Eggers and got cold feet 
In theory, I think it is a fantastic idea, but like @vpa2019 I have concerns about privacy and info security.
I read The Circle and don’t really follow your thought process there (don’t think you will have to be livestreaming your life to be in the project). I hope they get plenty of participants.
Just not keen on the idea of centralized surveillance of my ongoing health info - too many opportunities for sharing of info for other purposes.
There is the ask to share FitBit types of info as well as DNA.
Yes. I’m the person who doesn’t have a personal FB account, doesn’t wear a fitness tracking device and turns off location services on all my phone apps (aside from navigation). I’m aware that true privacy is really a non-existent feature of life with internet and mobile devices, but willingly giving over access to my ongoing personal heath status is a bridge too far…
This is important. I hope there are careful controls since it sounds like they are recruiting volunteers, who may not be representative.
@DeeCee36 so, is your person concerned about the data privacy? I know there are some long term studies that have been really helpful and I would not be against participating, but T-Mobile, Experian, every other private date info holder seems to get hacked. Not that hackers care about my medical records, but just how private is the data? How good are the people in charge?
Good point @smdur1970 that volunteers would not be truly representative whether that be race, religion, or health.
No, not particularly, but they also didn’t say anything to reassure me/address my concerns when I brought it up.
No. A zillion years ago I was all “stay away from 23andMe” and “don’t post photos” and everyone thought I was crazy, and I might be, but I wasn’t wrong. Researchers will use whatever they can get away with using for whatever they deem important at the time, and we’ve had some unhappy looks lately into what happens when seriously unprincipled people get near govt-held data. While I love the goal of putting together a giant comprehensive look at our health, there’s too much risk involved. Really unfortunate.
Personally, haven’t had problems yet from 23 and Me nor from posting photos.
Have met some “not too far off” relatives though. And I’ve enjoyed their medical “predisposition” reports, whether in my favor or not.
I guess that’s why I don’t mind if they use my data. I’ve benefitted from others allowing their data to be used. I’m more of a believer in the “Common Good.”
The problem isn’t that someone’s going to come and make it a one-on-one problem for you (usually). It’s a societal-level problem.
Say for instance that you give your DNA to 23andMe, essentially paying them to give them your most permanent information. To the company, you’re inconsequential, but your data aggregated with millions of other people’s is their entire business. It’s the thing they have to sell, which they do.
Now suppose, in that data set you’ve volunteered to contribute to, there are correlations that can be made amongst Disease A and Diseases B, C, and D. This is the stuff of research careers, so eventually someone does make those correlations and makes a bit of a career out of it, and the correlations have a moment in the sun before the researcher moves on to something else.
There are laws against forcing employees to disclose personal health information. Your employer can’t demand your DNA to find out how expensive you and your kids will be to insure. Suppose, however, you need some time off because you’re dealing with Disease B. It’s not a terribly serious disease, but it flares up now and then. However, HR’s statistical modeling now notes the correlation and says you have a decreased risk of A, but an increased risk of C and D, and D happens to be a very expensive disease. You don’t have D. You’ve never seen a doctor about D, never filed a claim about D, maybe have never even heard of D. However, you are an at-will employee and things are already very dicey with your firm’s healthcare costs, and soon you are a former employee. You won’t know why you were terminated because nobody’s required to tell you: you’re at-will.
That’s a relatively benign way in which the dataset use can go wrong. (Though from the perspective of actuaries, it hasn’t gone wrong at all: it’s worked just right.) There’s currently a very large contingent of autistic people in Britain – some of them researchers themselves – freaking out about Simon Baron-Cohen’s recently-launched genetic-research program into autism, collecting the DNA of 10K autistic people, because they fear that between bias against autistics/autism, various normal profit and career motives, and their relative political helplessness, the database will be susceptible to interpretations that will lead to their further abuse and suffering. (Consider current autism therapies that allow school administrators to apply electrical shocks to autistic students. I’ve been hearing impassioned argument about ABA for at least 15 years.) I’m not sure why this study in particular has attracted so much interest, unless it’s that it’s Baron-Cohen’s – there are already much larger datasets out there and available – but again, the issue is that large data that’s also highly personal can be pretty readily used in persecution, including polite forms of persecution that come with all the right university and medical-center stickers. And unfortunately it doesn’t help the persecuted if, 70 years later, some people notice what happened and then there’s general agreement that it was very very wrong and should never happen again.
There’s potential for the problems to be direct and personal, though if you are utterly conventional, part of a melting majority, and go-along in all ways, this probably won’t be a worry. Considering though that facial recognition is already used to identify entire crowds’ worth of protesters, and that such info is already connected to social media, credit card, transit, and city-security-camera activity, I cannot think that having the ability to connect that info with their genetic info would be a good thing. So if you think you’ll ever be in a protest crowd, or writing a sharply critical letter to an editor, or on the wrong side of an autocrat, I would not go handing out info you can’t disconnect from yourself.
It’s not.
Honestly, I have relatives who have worried about various “things” that could happen for decades. It hasn’t happened. They may have taken years off their life worrying, and stress could have led to their earlier than expected demises, but nothing they worried about happened. One who is still alive and worries about everything has significant health issues, likely brought on by stress.
I personally like all the advances medicine is making as they understand how parts of the human body are connected, genes and all. I have no desire to return to the past and look forward to more advances in the future.
Not everyone needs to participate. It’s fine if you don’t opt to be in.
Well – no, it’s not, which is what the rest of the post was about, and why that autistic community is freaking out. It’s not all about the individual and individual choices, much like other important things we’ve got going on. If you create giant datasets like this and leave them hanging around and open to misuse, they get misused, and people get hurt, whether they’re participating or not. Which is why anyone who’s inclined to participate for the good of all should be telling NIH “I’d love to participate, but you don’t have adequate controls on data use and protections for people who might be harmed by its misapplication. Go back to Congress, fix the problem with well-drafted legislation, and ask me again.” Then it has a shot at actually being for the good of all, rather than for the good of many and to the serious detriment of some, particularly those already marginalized.
“Noticing extant problems and planning to avoid creating them again” and “worrying about nothing” are different things. I also like science enough to work in it, and practically broke my finger stabbing the phone screen to accept my vax appointment when my turn came up. But I also know enough about science and its history to have some sense of mistakes we shouldn’t make again.