IMO, MEGA had its chance to explain what it was doing and why, and make it clear that what they were doing was on the up-and-up. I really thought the study had promise at first. Now I'm looking at a lot of unanswered questions on their part and a whole heaping helping of privilege: people believing it isn't their responsibility to demonstrate the ethical nature of their study design to a vulnerable patient population. And I don't say 'vulnerable' because we're fragile, but because we have been demonstrably maligned by researchers in the past.
But admitting that -- and admitting that transparency is more important with this patient population than others -- would be acknowledging that things have been mis-handled in the past. By people on your team.
It isn't clear how patients will be selected, what they're planning on doing with the data, what they're looking for -- it is, as Edwards pointed out, a fishing expedition. Now, view that through the lens of who's looking. They'll 'find' whatever it is that they want to find, and they'll spin it however best suits them.
Maybe this is the group's attempt to 'go straight' and get involved in biomedical, verifiable research. But if past is prologue, that's a very optimistic view.