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http://www.pharmatimes.com/Article/12-0 ... a_use.aspxSanger Institute survey tests waters on genomic data useJanuary 31, 2012 Peter Mansell
Sanger Institute survey tests waters on genomic data use
The Wellcome Trust Sanger Institute, the genomics research centre based in Cambridge, UK, is launching a survey to gauge the views of the public on how genetic research information should be used and shared.
The survey, which the Institute hopes will be the largest of its kind, is intended as a counterpoint to the report released last week by the Human Genomics Strategy Group, an independent cross-government advisory body chaired by Professor Sir John Bell.
The report made a series of recommendations to Ministers, with the overarching goal of enabling UK patients to benefit from genomic technology that can improve understanding of the nature of disease and allow tailoring of treatment to patients’ individual genetic make-up.
Among the specific recommendations were that genomic data should be linked to patients’ anonymised medical records through a secure national centre to create a centralised resource for research and diagnosis.
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Will be controversial
Measures in the UK to link patients’ DNA data to their medical records for research and diagnosis “will still be controversial”, Nicholls warned, “partly because of privacy issues and partly because of the disclosure problem that it could cause for insurers (and perhaps employers)”.
The government will therefore “have to sell the medical and economic benefits hard to some patients”, she suggested.
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