Biobanks and neo-liberalism: contrasting the US and the UK Professor Donna Dickenson University of London Author, Body Shopping: Converting Body Parts to Profit

Neo-liberalism and capital accumulation Neo-liberalism concedes one role to state: providing capital for capitalists Private interests in President’s Council of Advisors on Science and Technology wanted central NIH biobank (2008), but change of administration meant this never happened Alternative strategies needed to provide promissory capital in form of human tissue

23andMe hits 100,000 users in database June 2011: Co-founder and CEO Anna Wojcicki says her scientists now have one of the world's largest genetic databases, which will enable them to do "a tremendous amount of discovery.’ Company has offered tests at a loss ($99), on condition that information remains in firm’s own biobank and that customers provide additional health data. Loss leader for biobank? Similarly, TruGenetics has offered free DNA tests to first 10,000 customers who will hand over results for research

Another way to build a biobank Cf Kaiser Permanente: announced July 6 th that together with U Cal San Francisco, and with $24.8 million NIH grant, it has analyzed SNPs and medical histories from over 100,000 DNA samples, voluntarily sent by members, which it says is largest on record.

UK Biobank: origins Although UK Biobank is five times the size of Kaiser or 23andMe biobanks, it was originally only pilot scheme for a much wider NHS biobank. 1999: small group of influential figures with links to biotech industry began lobbying for a national registry of NHS electronic records linked to individuals’ DNA. “The NHS is probably the largest single source of medical information and well-characterized biological samples in Europe.” Ministerial technology group set up to drive agenda forward; co-chaired by GE Healthcare

Structure and funding Funded for £61.5 million by government (via Medical Research Council and DOH) and Wellcome Trust. MRC denied funding to some other projects to finance Biobank. Set up as charitable company, but researchers and firms will be able to access bank for fee. Reluctant to agree guidelines for access, despite continued pressure from own ethics governance body. Linked to personalized genetic testing and preventative pharmacogenetics. UK population identified as ‘under-consumers’ of drugs.

Politically driven? UK Parliamentary Science and Technology Committee (2003): “Our impression is that a scientific case for Biobank has been put forward by the funders to support a politically driven project.” Not subject to usual peer review Continued skepticism about whether gene- environmental interactions will emerge

Consent, property and confidentiality Initially UK Biobank expected to obtain blanket consent for any use—not specific research trials. Anonymization thought to end ethical issues. Privacy trumps property, but should it? Concerns about sale of records to industry without consent of individuals concerned. Google (link to 23andMe) involved in discussions with DOH (testimony by John Bell before Lords Science and Technology Committee)

Right to withdraw Originally participants had no right to withdraw tissue Participants may now request no further use, but Biobank admitted (2008) that information can’t be deleted altogether from Biobank records “This is due to the development of complex IT systems designed to protect the integrity and security of those taking part.” (British irony!) Although blood and urine samples will be destroyed it “may not be possible to trace all distributed sample remnants”

Why wasn’t property an issue? UK Biobank began recruiting in 2007 Despite criticisms of its public engagement programme as ignoring issues about benefit to commercial firms and ongoing consent, target (500,000 participants, aged 40-69) has been reached ahead of time—even though participants have no property rights in Biobank, which is sole owner of tissue/data

Conclusions Wallace 2009: decision to fund UK Biobank was “striking example of how science funding decisions are driven by a small group of politically unaccountable advisors”, with drug industry connections. Intended to allow UK to take lead in commercialising genome and to widen class of patients to include “pre-symptomatic” well. NHS seen as competitive selling point for UK.

Some questions to consider Development of biobanks in UK is just as commercially driven as US examples, but under cover of state institutions-- providing capital, data, research subjects and tissue. How can we get this across to a wider public without compromising their altruism? How can we convince public that biobanks matter? The biobanks chapter of Body Shopping was the one nobody read!—even though it was ban-up-to-date on Catalona. Are consent and confidentiality the only issues?