Facebook, Google Fund Nonprofits Shaping Privacy Debate

I think it's the thing in most areas with public and NGO advocacy groups. Although the groups are officially non-profits, they are often very profitable for its employees. Local Greenpeace branch essentially takes protection money from various developer and mining companies to look other way (at those that don't "sponsor" them) and use the money for bird conservation activities etc. in other areas.

If you think about it, it's not even that bad. No one else really cares much about the companies' exploits and the money is at the end at least partially used for praiseworthy goals. And wheel of market keeps spinning...

The same goes for all UNGOs and NGOs that operate around the world for various humanitarian causes. I have interned at places like World Vision, World Concern, and Save the Children; my sister has worked for almost three years at a well-known French NGO that operates in my home country (in SE Asia). A few other people I know work for various non-profit orgs like UNICEF and UNOCHA etc.

We notice one consistent thing: these purpose of organizations/institutions isn't as simple as "serve the best for the native population that they are supposed to save from natural/economic/humanitarian disaster". The need (say, for regional/program directors) to find the next funding to keep the project going trumps EVERY OTHER altruistic purpose. Also, these program directors don't stay for longer than 2-3 years (let alone getting to know the native population they are trying to help) and most of them are always trying to get in on the next action/conflict in another country, and/or to simply move to a better pasture (a more developed country). The management in these non-profit orgs--such as save the children, world vision, UNICEF--are always whitewashed (I do not intend this to come out negatively, but have to keep it real here) and they rarely promote native workers to have a say in things that matter (although native workers are the ones who have to do the day-to-day, on-the-field hard work). On Facebook, there has been a growing resentment by native workers toward these 'foreigners of ruling hierarchy' that work for non-profits (while taking up most of the salary+benefits and wasting donation money). I don't know how far it will go and am interested to see it out.

Excellent question. In my mind I had been thinking that it could be analogous to census data. That doesn't answer the why though, or how it would bring commensurate benefits to civilians.

I wrote that they sell it, which is wrong. They want to give it away for free. I don't know what is worse at this point. Patients don't have any possibility to protest.

It is in Germany and the law isn't active yet, but will be very soon. They basically create a central organization to collect data from all insurers. They receive info and are allowed to spread it to third parties in anonymized form.

> If the data is truly anonymized (and that's a big if), would you still have an issue?

Health data cannot be anonymized , since indicators and diagnoses can quickly identify a person. But no, this is my data and I do only share it when I explicitly consent to it.

You can opt out if you make enough money because that allows you to leave state insurance, which is kind of a real problem in our health system. But that wouldn't phase our current health minister, who seems to be an idiot and needs to be removed from office. His performance is bad enough.

I'm skeptical as to whether robust anonymisation is possible, given the incentives involved.

After all, the data is more valuable the more bits there are per patient record, for researchers to find correlations - and the more bits there are, the easier it is to de-anonymise. Especially as you never know how many bits of data are already public about a given individual.

And given that they're releasing the data to make a profit, or to advance research, anyone doing this has an incentive to release more bits - and no incentive to release fewer bits.