California Considers DNA Privacy Law

First of all, it isn't really a right, at least not yet, and second, without looking at the specific provisions and language of the bill you cannot tell whether or not the restrictions placed are reasonable. It certainly wouldn't be the first time an apparently well intentioned bill was written in such a way as to be incredibly and excessively difficult and expensive to follow. For one thing, TFA mentions that the only people who can access the information are people listed in the consent forms, which means any person doing the research as well as anyone assisting needs to be named, which is a massive PITA. It might even mean certain scientific papers couldn't be published, if it required disclosure of specifics about the genetic information (which is often the point). I feel that a scientists might object to such restrictions.

It would also require any current studies to gain the permission of anyone whose genetics they are currently studying (often thousands for each study), and it essentially means they would have to completely throw out every single data set they have collected once the study is done, too. All in all, these are scientists doing research making the complaint. I don't think their goal is to infringe people's privacy.

And ironically, the bill will probably decrease the privacy of people involved in the research. Since each use requires the authorization of the individuals whose genetics are involved, you can't permanently anonymize the data: someone needs to be able to find out to whom each strand of DNA they are working on belongs (and show proof that each individual has given consent), which means the current anonymization that is standard cannot be employed. Translation: for research purposes, the bill might well end up doing the exact opposite of what is intended.

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