The Data Access Wars

This is the first of three Crusoe posts. For background on Crusoe, see Watch where you wave that wandThe Oedipus EffectThe Tree must go.

Beta Centauri was unquestionably a long way from Massachusetts. Somewhat to her surprise Crusoe found breathing no problem, and the temperature seemed just about right. The scenery as they’d come in was not unlike that of a temperate zone on earth.

Walking around, she had begun to wonder if there were clinics there when she spotted the entrance to what was unquestionably a medical facility. Going in, she found a procedure in progress. It seemed sophisticated – no anaesthesia. Wounds from battle or other encounters seemed to heal under the touch of a vibrating instrument passed slowly over them. In other cases apparently normal limbs turned out to be quite artificial, and repairing them was entirely bloodless. This was a new frontier.

But it was another building that ultimately drew her attention. Where only those in obvious need of care for something like a severed limb went to what she would have called a clinic, everyone came to this other building at some point. Here the staff administered a supply of some substance. The same for everyone. Crusoe took some. She noticed no effect.

What was it? She didn’t want to ask as who knew what would happen if the Centaurians realized she didn’t need what it seemed they did. It was only in one of the taverns in town, after a few drinks, that she was able without raising suspicions to get someone to tell her what went on in the building.

Some decades earlier, faced they were told with a looming pandemic, the entire population of the Economy was vaccinated. This was done compulsorily. The Corporation was the only body who held supplies of the right vaccine. While treatment may have saved them from something, there was a side effect.

This was not spotted at first – at least this was how Centaurian history recorded it. The vaccine knocked out a gene and all children borne after that were short of a protein – alpha-nucleositol, without which life was impossible. Fortunately very few children died, as when the problem declared itself in the first few children, the Corporation rushed out supplies of alpha-nucleositol and supplied it to everyone. Provided they took it, everything was okay. It came free of charge but with a requirement for annual screening.

No-one knew quite what was being screened for. But there were rumors. Some said that if the screening revealed that the subject held aberrant views on the Economy or the merits of the Corporation, the person’s supply of alpha-nucleositol was terminated. Everyone, including bioethicists and others with no links to the Economy or the Corporation, justified this on the basis that the Economy couldn’t be expected to support the continued existence of those who disagreed with its principles.

Every so often small groups it was rumored escaped with a supply of alpha-nucleositol, and headed it was said for some planet on the outer limits of galaxy, where it was rumored that someone had synthesized a gene for alpha-nucleositol.

What Crusoe needed she realized was information on where they were going and someone she could trust to get her there. Where’s Harrison Ford when you need him?


This take on Star Wars is not as remote as it seems. It’s happening on the planet right here beneath our feet.

Quite innocently some decades ago a network was set up by Silvio Garattini among others to investigate rare diseases. This later gave rise to Eurordis, an organization to speak on behalf of patients with rare diseases.

An organization of patients and by patients and for patients sounds like a wonderful thing but far from being a sanetocracy it has turned out to be an insanetocracy.

As it happens as of 2011 Eurordis took funds from 38 different pharmaceutical companies. These only amounted however to 22% of their income. Financial conflicts are not really the issue – they could survive without the money. It’s something else that keeps them tied to the Corporation. This is the patient group for whom pharmaceutical solutions are a lifeline. They are more committed to the interests of the pharmaceutical industry than are any of the employees of any of the pharmaceutical companies.

They can be absolutely depended upon to read the runes right and come out with a strong industry position, making it possible for industry representatives to sound relatively accommodating to others in contrast – as they did at the European Medicines’ Agency meeting on access to clinical trial data in November.

Eurordis don’t want anyone to know about any planet where you might get your gene transplant and they want us to ban anyone who is not a certified pilot or who might be flying some battered old jalopy. Han Solo and Indiana Jones not welcome.