Fostering public engagement in the ethical and social implications of genetic technologies

Care.data and exercising our right to democracy

We have until March to opt out of the care.data initiative. The "theoretical risk" that we might be reidentified from our personal data once it is made available to third parties is a compelling reason to opt out. However, this is not the only reason. Care.data is part of a major legislative programme that includes the Clinical Practice Research Datalink (CPRD) and the 100,000 genome project – through which whole-sequenced genomes will be put to commercial use. These major infrastructural developments have been accompanied by radical changes to privacy law that have resulted in a cultural shift in the governance of information. These sweeping changes in privacy law were introduced without consultation, and the risks they entail will be borne by those whose medical records may be accessed without their consent. How did we ...
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Ethicsand @Ethicsand report on genetic privacy and the commercialisation of genetic data - covered by the Guardian guardian.co.uk/politics/2013/… … …

Friday, 05 July 2013 via web • 3 retweets

Ethicsand
Ethicsand Caldicott2 was not an independent review of privacy. Privacy laws have been redefined by the commercialization of personal data @Ethicsand

Friday, 05 July 2013 via web • 1 retweet

Ethicsand
Ethicsand All #NHS users can now, by default, have their medical records accessed by pharma companies, to take part in clinical trials. Happy 65th!

Friday, 05 July 2013 via web • 6 retweets

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