The document attached has been archived with permission from the editor of the Medical Journal of Australia. An external link to the publisher’s copy is included

Heller, Richard F.

Jamrozik, Konrad

Weller, David P.

The Medical Journal of Australia

Adelaide Research &amp; Scholarship

PO STCARD FROM TH E UKBiobank: who’d bank on it?The Medical Journal of Australia ISSN: 0025-729X 17 January 2005 182 2 56-57©The Medical Journal of Australia 2005www.mja.com.auPostcard from the UKresulted in disease. And so the idea of the UK BiobaIt is truly a bold concept — to enrol 1% oKingdom’s population, or around 3% of people in tgroup 45–69 years, into a massive cohort study in wmaterial is held for all participants. With 500 000the UK Biobank cohort stands to be 50% larger thmen originally screened for the Multiple Risk FactoIt is truly a bold concept — to recruit 1% of the UK population into a massive cohort study — but, 1000 days into the project, not a single participant had been enrolledveanchO r 5 years ago leading minds within the Wellcome Trustd the Medical Research Council (MRC) realised thatarting the entire genome of one human would donothing to improve health. They argued that the real meaningand significance of genes could only be unravelled by alsostudying their owners’ behaviours and environments to deter-mine which combinations conferred resilience and whichnk was born.f the Unitedhe target age-hich genetic participants,an the set ofr InterventionTrial in the United States, twice the size of the cohort for thecombined US Nurses Health Studies, 12 times bigger than that ofthe study of smoking in British doctors,and 100 times larger than that of thefamous Framingham Heart Study.Indeed, the driving force behind UKBiobank is a desire to have adequatestatistical power to study gene–environ-ment interactions for individual types ofcancer, bearing in mind that, in the UK,all types of breast cancer combinedaccount for about 4% of all deaths inwomen, and all types of lung cancercollectively cause about 7% of deaths in men. Despite this, thereis not yet any commitment to go beyond “risk factorology” toanswer questions of public health importance. For example,Biobank would be an invaluable opportunity to explore therelationship between individual characteristics and either thecontextual influences on health, such as the physical and socialnature of one’s neighbourhood, or the impact of health and socialpolicy programs.Between them, Wellcome, the MRC and the UK Department ofHealth have made £61 million available to UK Biobank. But,1000 days into the project, not a single participant had beenenrolled, even into a pilot study. Instead, time and energy hasbeen consumed in:• creating UK Biobank Limited as a private company, limited byguarantee, and as a registered charity;• having consortia of universities (mainly their medical schools)bid to be regional collaborating centres, and then drafting andredrafting contracts for them to provide “research services” to theprivate company;• recruiting a Chief Executive Officer, a Chief Scientific Officer,a Chief Operating Officer, a Director of Operations (Laboratory),a Director of Clinical Operations, a Head of Communications,and a Chief Information Officer;• commissioning a market research company to report onattitudes of people in later middle age to inform a Communica-tions and Consultation Strategy;• developing an Ethics and Governance Framework, compli-ance with which is to be overseen by an Ethics and GovernanceCouncil, whose members will be recommended to the funders byan appointments committee;• writing an Intellectual Property and Access Policy; and• asking a marketing agency to develop a logo and brand.There have also been protracted debates about which behav-ioural, lifestyle and environmental factors to document, andwhether the collaborating centres that enrol participants shouldhave any preferential access to the data and samples held by UKBiobank, let alone a share in their formal ownership. As yet, therehas been very little consideration as to how endpoints of interestwill be identified and validated. Sir Humphrey Appleby would beproud!On the subject of public image, perhaps it is the picture of ahappy granny riding a moped without a helmet, shown in theoriginal documents with general infor-mation about the project, that crystal-lises a suspicion that people withworld-class expertise in the “moleculesof life” do not necessarily have a stronggrasp of public health and the skillsrequired to enrol and follow up verylarge numbers of intact, free-livinghumans.Also interesting is the stark contrastbetween UK Biobank and Australia’sRisk Factor Prevalence Study. The latter was initiated by a non-government organisation, the National Heart Foundation (NHF),which succeeded in completing three large, population-basedsurveys of risk factors for cardiovascular disease, mainly inAustralia’s capital cities, during the 1980s.1 Enrolment involvedcompletion of a questionnaire, a brief physical examination,collection of a blood sample and sometimes a dietary survey,directly equivalent to what participation in UK Biobank is likelyto involve. The survey centres had their costs covered, as isproposed for the UK project, but, unlike UK Biobank, theirleaders made up the main committee overseeing the study anddirected the principal analyses and their publication, initiallyunder the aegis of the NHF alone, and in the last survey incollaboration with the Australian Institute of Health and Welfare.Each survey took about a year to plan, a year to complete andtwo further years to publish. Covering slightly under 0.1% ofAustralia’s population, the Risk Factor Prevalence Study was anorder of magnitude less ambitious than UK Biobank, but itconstitutes a model of energy, trust, efficiency and goodwill thatthe Brits are struggling to emulate.It was not always thus, for Richard Doll and Richard Peto (andcolleagues) recently published the 50-year results from theirstudy of British doctors, a project whose outstanding achieve-ments include a follow-up that is 99% complete.2 UK Biobank,by contrast, seems baffled by its own complexity, stranded in aUK Biobank . . . seems baffled by its own complexity, stranded in a bunkum of companies, contractsand consortia that makesdecoding the double helix look like child’s play56 MJA • Volume 182 Number 2 • 17 January 2005PO STCARD FROM TH E UKbunkum of companies, contracts and consortia that makesdecoding the double helix look like child’s play.Konrad JamrozikProfessor of Primary Care EpidemiologyDepartment of Primary Care and Social MedicineImperial College of Science, Technology and Medicine, London, UKk.jamrozik@sph.uq.edu.auDavid P WellerProfessor of General Practice, Department of General PracticeDivision of Community Health SciencesUniversity of Edinburgh, Edinburgh, UKRichard F HellerProfessor of Public Health, Evidence for Population Health UnitSchool of Epidemiology and Health SciencesUniversity of Manchester, Manchester, UKCompeting interests: Two of us (K J and D P W) are members of RegionalCollaborating Centres of UK Biobank and are bound by confidentialityagreements that preclude disclosure of certain documents relating to theproject. However, the information in this article is all on UK Biobank’swebsite: www.biobank.ac.uk1 National Heart Foundation and Australian Institute of Health and Wel-fare. Risk Factor Prevalence Study – Survey No. 3, 1989. Canberra: NHF,1991.2 Doll R, Peto R, Boreham J, Sutherland I. Mortality in relation to smoking:50 years’ observations on male British doctors. BMJ 2004; 328: 1519. ❏MJA • Volume 182 Number 2 • 17 January 2005 57

Biobank: Who'd bank on it?

Jamrozik, K

Weller, DP

Heller, RF

University of Queensland eSpace

Biobank: who'd bank on it?

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Biobank: Who'd bank on it?

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Biobank: Who'd bank on it?

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