Ok, ok, I'm liking those questions !
It would be great to be able to hook to other networks/data sources.
A model where the data is referenced instead of stored would even save engineering resources and storage/compute costs. Even the referencing itself could be externalised (for example through a directory service such as repostive.io).
If this ends up being practical, the role of DNA\/ID would be to link the data from external resources to 'DNA IDs', ie users, registered on the system. Then, to make sure that there is no breach of their rights and preferences (see below).
The core technological difference is in the second and third layers.
While OpenHumans allow to share, or not, your data, more detailed permissions should be implemented.
The protection of DNA information is not a settled issue from a legal standpoint and a sophisticated approach is needed.
- There is a disease mutation that I carry, and I don't want to publish it. I should be able to mask it, while contributing the rest to research. Maybe, there could be optional masking of all disease genes. Maybe, I am only ok in sharing my cancer-gene DNA.
- I should be able to ask for research results to be returned to me: for example, the researcher is expected to report back if they find something of significance. Maybe, I explicitly don't want to know if I have a high risk for developing an incurable disease.
- Perhaps, I only consent in participating in a drug discovery trial if I can get a free or discounted drug, if it is discovered. Or, I want to be paid money to participate if it is for-profit.
- Perhaps, I want to make myself available to chat with the researcher(s), answering their questions in real-time or doing stuff they ask me to do: change my diet? My medication? ... imagine the possibilities!
- Publishing my DNA discloses information about my children, brothers and sisters, parents, etc. There should be a way for asking them to participate in the decisions about their use. For the case of my children, I even want to involve a non-DNA relative: their mother
- There should be a way for my family/tribe to share and manage our DNAs
- It should include sharing with my doctor/genetic counselor
- There should be a good traceability of who has accessed my data and what has been done with it (tough technically challenging)
- There should be rules for what happens when I die
The core mission difference is that it is meant to be built from the individual and it's family network up. In contrast, OpenHumans is made for individuals to shop for research studies, read and approve their consent forms, etc.
This can seem restrictive but I think it will open up the field for it to be brainless to opt-in for any individual as privacy concerns, value-sharing, and trust, are at the core of the platform.
The field is ripe IMO to pull in massive numbers of non-genotyped individuals that could be then sponsored for sequencing.
What I tried to say is different. (I agree Promethease is neat and needs improvement, but would see it more in the app layer).
We are trying to build a community whose value increases enormously with the number of participants. The corrolary is that it is hard to provide value to the early adopters.
A way out is to first focus on helping a small, defined community (think Facebook starting at Harvard).
I felt the story about a woman with Ovarian cancer who was able to find a cure through looking at her cancer's DNA was inspiring. Why not focus on all people with one such disease first?