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

Research

Ethicsandgenetics 2013 A Shift in Privacy Law and the Attendant Risks
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06 February 2014
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EthicsandGenetics has published ‘A Shift in Privacy Law, and the Attendant Risks'. In this report, we identify and explore the risks associated with the government’s plans to establish a national genetic database and commercialise personal genetic information. Furthermore, the report assesses changes to privacy law and practice, in particular, the recent information governance review, and demonstrates that the new privacy framework fails to adequately safeguard highly sensitive information. The report reveals that the government are set to commercialise personal genetic information, collected from the population, and stored on a national genetic database. EthicsandGenetics can also reveal that now, by default, NHS users can be contacted to take part in clinical trials with private companies, without having expressed an interest in taking part in research of any kind, let alone clinical trials.
EthicsandGenetics (2012) Research Note Privacy and the Commercialization of Personal Medical and Genetic Information
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304.32 kB
Date:
28 September 2014
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This Research Note reveals that the government is planning on establishing a national genomic database. It discusses changes to privacy law and a major legislative programme that has resulted in a cultural-shift in information governance.
EthicsandGenetics Research Note (2015) Privacy Concerns in the Development of Personalised Medicine and the 100,000 Genome Project
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Date:
10 March 2015
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With the UK launch of 23andMe’s home DNA testing kit, the legalisation of mitochondrial DNA transfer, and the 100,000 Genome Project underway, optimism abounds about the science of genetics delivering on its early promise. But there is also cause for greater caution and oversight than some biotechnology enthusiasts would like to admit. These developments are taking place with insufficient regard for their social and ethical implications. We can, however, be sure that the policies and regulatory frameworks currently being enacted will shape future decisions. A balance needs to be struck between the pro-R&D agenda that is driving a permissive regulatory regime, and sensitivity towards concerns about genetic technologies - that public consultation, if properly conducted, can alert us to. It is in the public interest that there is wider discussion...
 
 

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