Unless somehow it were possible to gain a monopoly on curing people, which is plausible but fundamentally not the responsibility of the researchers.
The new common rule provides for just such a thing called broad consent, which requires tracking patient consent in a fine-grained and revokable way. Interestingly, about the time it came into effect, I heard about a new start-up supported by George Church, called Nebula, which provides just such a consent service using a blockchain.
So, the regulatory framework exists, and a product to implement that is on the market. And this stuff was in discussion for better part of a decade, so it's not like this just snuck up on people.
I have a medical issue with no cure and so does my dad. My mother died from cancer a few years ago. I could care less if they make a profit or not so long as it improves my quality of life and that of my father.
For much of my mother's treatment, both the first time she got cancer (and beat it) and the second time (when she did not), she was getting treatment that only existed in the US. Why? Because it's profitable here.
I myself take an orphan drug only available in the US and only developed because of changes like the Orphan Drug Act of 1983.
Altruism is fine and good, but profit-seeking is more effective and expedient.
It doesn't matter if you can afford everything in the world if the thing you need is never developed in the first place.
Some of the treatments me and my family have had were not available in Europe, Canada and other universal healthcare countries at any price. I would have probably lost almost two decades of time that I got to spend with my mother because she got treatment in the US the first time she got cancer. She was British and at the time the NHS had the 2nd worst success rates for cancer of all OECD countries and the US had the highest success rates.
Wanting to accelerate the development of novel drugs and therapies to treat disease is great. But rather than giving a private company carte blanche to share data with third parties trusting (hoping?) that the outcome will benefit humanity, it would be better first to establish a sensible regulatory framework around genetic information and its uses by private companies and the governnment.