Image: Flickr/Dave Fayram
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A sample kit for the Personal Genome Project. Image: Flickr/Peter Rukavina
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A researcher analysing a genome. Image: Flickr/DOE Joint Genome Institute
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A specimen for 23andMe's genome sequencing program. Image: Flickr/Peter Rukavina
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A more personal decision that needs to be considered is that this data will be stored or worked on for longer than your lifetime, and that of your relatives. As Caulfield pointed out, giving up your genetic data results in you “donating your biological story for a very long period of time.”This leads onto what legal protections should be in place for all of this data. One of the problems plaguing privacy laws already is the huge variation in them across the planet. That becomes an even greater problem when data is being accessed by researchers from different parts of the world. “One of the underlying themes of big data is that the data will be available anywhere,” Caulfield said.There are attempts at a harmonization of laws that would mitigate this. A powerful new data protection law is being passed in Europe, for instance—but it is yet to gain support from the UK government.Caulfield pointed out that it's important whatever laws are applied to genetic data are balanced. “You can also get an over-reaction,” he said. “We saw that with cloning, for example," Research in that domain was stifled in the US and Europe while it blossomed in countries with different regulations, such as China.“Having evidence-based, informed laws is really important,” Caulfield said. Similar to protections for facial recognition information, and even more basic biometric data such as fingerprints, legal protections specifically crafted for genetic data are in their infancy. It is “a very complicated issue, and one that needs more investigation,” he concluded."If I'm getting my whole genome sequenced, and then joining a biobank, that information about me is going to have relevance to my brothers for sure."