The Precision Medicine Initiative
, launched during the Obama administration, is in beta phase and has enrolled about 30,000 participants in a project to collect big data for use by health researchers from 1 million or more Americans.
I got really excited about this at a talk tonight. Much of the logistics are still in the planning phase, but a lot has also been set up and is underway. They seem to be approaching the whole project with the participants' best interests in mind, calling them 'partners'. Ultimately (2019) participants will have access to their blood, urine, genomic and other results through a portal. They are working out all the issues involved with releasing the genetic information, need for counselors etc, so they're working to enable the participants to own their data in a responsible way. All the labs will be run through credentialed laboratories so that participants' doctors can justify using them clinically.
Mayo is handling all the blood samples. Vanderbilt is managing the big data, which rather than being stored online, will be offline until a given researcher's proposal for use of the data is approved, and then only that data subject to the research project would be released to those researchers. The data will be separated from personal information everywhere except at the participants' portals. Insurance companies and others will not have access to the genomic and other data (according to the presenter I heard). If you consent to your data being included in a research project, and those researchers need more data from you, then you can consent to additional samples, images ... and again, the results go to your portal.
This seems like a great opportunity for us, although the fact is that if they get to 1,000,000 participants, our 'little' forum participating will be dwarfed by all the ApoE4 carriers enrolling who don't know their status, let along about us here. Taking the long view, this is going to be a huge
set of big data for researchers to mine, and Alzheimer's researchers will be among them. I spoke with the presenter afterward and he said that one of the big whigs (my words) at the Banner Alzheimer's Institute is on one of the planning committees with him. I'm not sure if ApoE4 will be included in the initial testing, but this video update on the genetics part of the data gathering
suggests it will be, since they're preparing for whole genome sequencing, at least for some participants. Do you realize that means, I think (!), that these participants would have access to their whole genome data!? They are literally planning to fund and launch sequencing centers to handle the load.
They also plan to include wearable data, starting with FitBit and then expanding to other brands. They're in talks with FitBit about how they could anonymize the wearable data for the data bank.
One thing that doesn't make sense to me... I was told they are only taking about three tablespoons of blood at the outset. It doesn't seem like you can test much in that!? Heck, I've had 21 tubes drawn at once. So I'd expect the blood biomarkers to be fairly basic unless more is requested down the road. I don't think any imaging is being done, but researchers using the data for a subgroup might request images or other data needed for their research goals.
It will be interesting to watch this unfold. I plan to take part in the beta phase available to people who already have some healthcare connection to one of the first four recruiting centers. More info with lots of short videos here
ApoE 3/4 > Thanks in advance for any responses made to my posts.