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

Care.data, Genomics, and the Launch of 'Accredited Safe Havens'

The decision to roll-out Care.data and the proposal to launch 'Accredited safe Havens' across the UK, gives compelling reasons to support the EU's strengthening of the data protection regime.  Following the announcement that Care.data will be rolled-out across England, a further, even more significant development is the proposal to launch ‘accredited safe havens’ (Ash). As a defining moment in the governance of personal information, ‘accredited safe havens’ will render obsolete the need to seek approval from the Secretary of State for Health and, in the case of medical research, by a research ethics committee or the Health Research Authority. This will make personal identifiable information easily accessible without a person’s consent and for purposes ‘other than direct care’.  Circumventing the legal instruments that have been germane ...
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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

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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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