Posted on Jul 5, 2016 by Rick Falkvinge

Swedish politicians consider opening population’s medical-research DNA database for private insurance companies

Since 1975, Sweden has taken a DNA sample from all newborns for medical research purposes, and asked parents’ consent to do so for this research purpose. This means that over time, Sweden has built the world’s most comprehensive DNA database over everybody under 43 years of age. But now, politicians are considering opening up this research-only DNA database to law enforcement and private insurance companies.

It was a treasure to the scientific community, at the same time as it held enormous privacy risks that were not foreseen at the time. Scientists desired to study Phenylketonuria (PKU), a hereditary metabolism deficiency that, among other things, turns the common diet-soda-sweetener aspartame into a lethal poison. A DNA database over the entire population where genes could be traced like this was a marvel, an Alexandria for research. So since 1975, parents have been asked for consent to take a blood sample of newborns to this medical research database.

As the DNA database filled up, it started attracting the attention of law enforcement. As in, “wait, there’s a DNA database over the entire population? Unregulated? What do you mean it’s for medical research only?”

So now, politicians in Sweden have come up with the boneheaded and deceptive idea of opening up the research-only DNA database (Google Translate link) for use beyond the good of humanity – and to use its material against those who donated their genome to it. Politicians have commissioned a report to see if, and how, the database should be opened up not just for law enforcement, but also for private insurance companies. (Hereditary disease? Up go your premiums!)

This is, of course, an outrageous and audacious breach of contract with the parents who were promised the sample would be used only for the good of humanity in terms of medical research. The instant there’s a mere suspicion that this will be used against the sampled newborn in the future – as is the case now – instead of being used for the good of humanity as a whole, people won’t provide the DNA database with more samples, or at least not enough samples to provide researchable coverage.

Thus, politicians have already destroyed the medical research by hinting they are even considering breaking the original contract. But even though the research has been effectively destroyed, most parents won’t know the blood sample can be used to give the newborn higher insurance premiums in the future, so many will continue to consent to enter their newborn into the (now) law enforcement DNA database.

Privacy does remain your own responsibility.

UPDATE: Andy Halsall tweets in response and adds “If the data exists, it’s going to be used”, which is blunt but true.

About Rick Falkvinge

Rick is Head of Privacy at Private Internet Access. He is also the founder of the first Pirate Party and is a political evangelist, traveling around Europe and the world to talk and write about ideas of a sensible information policy. Additionally, he has a tech entrepreneur background and loves good whisky and fast motorcycles.


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