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UK Biobank outlines ethics plans

26 September 2003
By BioNews
Appeared in BioNews 227

UK Biobank this week outlined a new Ethics and Governance framework for its massive data-gathering exercise. The project aims to build a major research resource to improve prevention, diagnosis and treatment of illness by following, they hope, half a million volunteers aged 45-69 for many years. Volunteers' test results and questionnaire responses will be linked to their NHS medical records and other genetic data, to investigate the health effects of the relationship between genes and lifestyle. A UK Biobank spokesman said that the real benefits of their discoveries will be felt after 25-30 years.

The Biobank project has been deeply controversial with concerns being raised about the methodology and cost of the project, and about its heavy reliance on sometimes over-stretched NHS information and record-keeping systems.

Chief executive Professor John Newton said that participants in Biobank would not receive personalised health warnings relating to any specific health indicators that could be discovered in their data. General information about links between illness, genes and lifestyle will be made available as the research goes on, which participants can then discuss with a health practitioner. Paul Burton of the Biobank science committee said 'At the moment society is not yet used to the idea that genetic risk is just another form of risk - at the moment feeding back to individuals could cause a panic'.

This week plans for the international Public Population Program in Genomics (P3G) were unveiled. This information-sharing exercise hopes to bring together UK Biobank, CARTaGENE in Quebec, the Estonian national gene bank project and the GenomEUtwin project in Finland to 'create an open, common and accessible dataset' that the four projects can share, according to the director, Professor Bartha Knoppers of the Centre de Recherche en droit Public, in Montreal, Canada.

Gene study will provide 30 years of human data
The Guardian |  25 September 2003
Rules for UK Biobank revealed
BBC News Online |  25 September 2003
UK Biobank Ethics and Governance Framework
UK Biobank |  25 September 2003
Will Biobank pay off?
BBC News Online |  25 September 2003
15 March 2006 - by BioNews 
A project to collect DNA samples and medical information from half a million Britons was launched this week, after years of planning. The UK Biobank, hosted at the University of Manchester, eventually wants to recruit up to 500,000 volunteers aged between 40-69 years. Initially, 3000 people living in the...
9 February 2006 - by BioNews 
Two projects aiming to pinpoint genetic and other influences on health have been launched in the US. The Genes and Environment Initiative (GEI), based at the National Institutes of Health (NIH), will look at genetic variations and measure environmental factors such as exposure to toxins. The other initiative is a...
2 February 2006 - by BioNews 
A new project looking at the influence of genes on common diseases such as heart disease, diabetes, stroke, osteoporosis, depression and schizophrenia in Scottish people has begun recruiting volunteers. The 'Generation Scotland: Scottish Family Health Study' will initially recruit 15,000 Scots aged between 35 and 55, with the eventual aim...
23 January 2006 - by Dr Jess Buxton 
In this week's BioNews, we report that the UK Biobank project is gearing up to begin recruiting volunteers - half a million of them. Potential participants aged 40-69 will be randomly selected via health registers, and asked to take part in the study. If they consent, they will need to...
20 January 2006 - by BioNews 
A project to collect DNA samples and medical information from half a million Britons is to be launched within weeks, New Scientist magazine reports. The UK Biobank, hosted at the University of Manchester, wants to recruit up to 500,000 volunteers aged between 45-69 years. The aim of the project...
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