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UK Biobank launched to mixed reception

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Page 1: UK Biobank launched to mixed reception

Newsdesk

390 http://neurology.thelancet.com Vol 5 May 2006

In mid March, UK Biobank was fi nally launched and has begun recruiting in Manchester before nationwide enrolment begins later in the year. “This follows a series of detailed pilot studies of the study questionnaire and measurements, as well as ensuring that an extensive range of analytes can be measured in the samples being collected”, explains Rory Collins (Chief Executive Offi cer, Biobank, and University of Oxford, UK).

Over the next 20–30 years, Biobank will gather information about the health and lifestyle of 500 000 volunteers age 40–69 years. Once they have given consent, each participant will be asked to donate a blood and urine sample, have some standard tests (such as blood pressure), and complete a confi dential lifestyle questionnaire. Their health will then be assessed through routine medical records. “By using multiple sources of information about outcomes of interest (such as discharge records and laboratory results), we anticipate that reliable diagnoses can be made”, says Collins. The anonymised information and samples will be made available to researchers worldwide to enable them to study how the complex interplay of genes, lifestyle, and environment aff ect our risk of diseases such as vascular disease, cancer, and

neurological disorders, such as Alzheimer’s disease.

“The UK Biobank project is widely regarded as a groundbreaking study that will deliver a wealth of new information about both environmental and genetic determinants of common diseases”, says Stephen MacMahon (George Institute, University of Sydney, Australia). In the past century, it was the US-based Framingham study that made fundamental discoveries, such as cholesterol as a cause of heart disease and high blood pressure as a cause of stroke. “This century, the UK Biobank project is currently best placed to deliver similar evidence about the causes of diseases as diverse as Alzheimer’s and prostate cancer”, predicts MacMahon.

“We would anticipate that UK Biobank will have its greatest impact on the more common neurological conditions (such as stroke and various forms of cognitive impairment) since, as long-term follow-up continues, it is likely to provide suffi cient numbers of cases of these diseases for their reliable study”, reports Collins. UK Biobank should help to identify new causes, and thus new ways to prevent and treat the disease of interest. “During the next 5 years, however, the chief emphasis will be on recruiting participants and establishing the UK Biobank resource, with case-control comparisons becoming informative only subsequently when suffi cient numbers of participants have developed any particular disease.”

“These banks will be useful for common diseases where DNA and tissue is readily available, but where rigorously standardised clinical data are often not available”, agrees Peter St George-Hyslop (Center for Research in Neurodegenerative Disease, University of Toronto, Canada). The banks will probably yield important information on uncommon diseases where access to biological tissues and clinical data are usually very limited. However, St George-Hyslop warns that the critical

limitation, which is true for all prospectively collected banks, is the type, complexity, robustness, and reproducibility of the clinical data contained in them. “There is also a selection bias from the fact that it’s driven by volunteering rather than by a strict population-based approach: this may also bias results”, he says. Biobank is not a panacea for all of the diffi culties facing biomedical research. ”Obviously, if the ‘correct’ questions for a specifi c disease weren’t in the environmental assessment, if the biomarker is labile or not expressed in the collected tissues, then it draws a blank for that specifi c use”, says St George-Hyslop.

Alan Petersen (School of Sociology, Politics and Law, University of Plymouth, UK) is also concerned about the limitations of UK Biobank. “We are hoping for insights into the contribution of genes, environment, and lifestyle to the development of disease. However, it is neither hypothesis-driven nor guided by the study of particular diseases”, he says. Information will be available to industry on a sliding scale and it seems research agenda could be determined by commercial priorities, he says.

Nevertheless, UK Biobank has the full backing of the country’s general practitioners. “UK Biobank is, in our view, one of the most important scientifi c endeavours of the 21st century”, says Nigel Mathers, chair of the Royal College of General Practitioners. He is convinced that it will build on our existing knowledge of epidemiology and other initiatives, such as the Human Genome Project, to create a database of information and samples. “These can be used to help us in general practice to better diagnose and treat common diseases in the future. The Royal College of General Practitioners fully endorses Biobank and strongly supports the voluntary participation of our patients”, he confi rms.

Kathryn Senior

UK Biobank launched to mixed reception

Over 20–30 years the bank will yield information on uncommon diseases

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