Sorry, it has been a busy weekend and I am afraid that this issue of the BioEdge newsletter is being sent out rather late.
Last week the media was full of news about the US government’s surveillance of the internet. As everyone knows by now, companies like Facebook, Google, Microsoft and Yahoo allow the National Security Agency to trawl through their records to prevent terrorist attacks. The US may be sharing some information with intelligence agencies of other governments as well.
Which leads one to ask whether privacy is possible any more. The bioethics angle on this is genetic privacy. It turns out that a skilled number-cruncher can identity participants in genetic research studies by cross-referencing their DNA with publicly available information.
When people become aware of this, will they be willing to disclose their genetic data to researchers? Is it ethical for researchers to store their records in the cloud? What safeguards must scientists and doctors take to ensure the privacy of participants and patients?
There are a lot of questions that need to be asked in the wake of Edward Snowden’s revelations.
Is genetic privacy possible?
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