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by Kliment 2376 days ago
There's a number of charities that have been exposed like this - care homes run by charities have been exposed for sexual abuse and violence, homeless charities have been exposed for selling data to deportation agencies. The situation there is different because people come to those organizations expecting help in a crisis or untenable situation and end up harmed rather than helped. In the case of people giving their genetic data to a for-profit corporation there is the reasonable expectation that that data is not and was never safe because any such organization is a target to friendly or hostile takeovers by organizations that wish to harm the users. So in one case it's a matter of a broken promise, an organization doing the opposite of what its very purpose of existence is, and in the other case it's just capitalism doing what capitalism does.
1 comments

> there is the reasonable expectation that that data is not and was never safe

This is key, and not everyone has this expectation when they use these services. Most people do not, and they're not entirely wrong. If you examine the various genetic testing corporations' user agreements, many of them place explicit limits on what happens to original DNA or replicated copies if the company is sold, merged, or otherwise changes. Companies do tend to hold to that kind of legal agreement provided it was sincere in the first place (there's no fine print providing loopholes) because it can get them sued.

Even the companies providing genetic data for research aren't providing the original DNA, only marker or SNP data, and it's probably de-identified to comply with HIPAA and other privacy laws.

The corporation