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Commentary on models of biobanks and implications for reproductive health innovation

  • Biobanking Eggs and Embryos for Research
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Notes

  1. In a comment to the Welfare committee of the Parliament (Alþingi Erindi nr. Þ 143/658. 2011) Kári Stefánsson of deCODE/Amgen proposes an addition to the law on biobanks: ‘Derived information, including imputed genotypes, shall not be considered health information. Reasoning: Derived information is not about personal information, i.e. not measured or confirmed information about individuals, but is instead predictions about certain characteristics'.

  2. ‘In addition to the clues into what makes us human, the data generated by combining the genetic information and the medical information for an entire nation are already showing remarkable insights into medical biology, with strong implications for clinical translation,’ said Nature Genetics Chief Editor Myles Axton. (Cortez 2015).

  3. There is no mention of any payments to the Icelandic state regarding the sale of NextCode. If there had been any such payments to the Icelandic government they surely would have been announced.

  4. By accepting the gift the Government of Iceland must commit at least the equivalent in matching funds. The PET/CT requires creation of a new building to house it, the erection of a cyclotron facility, the erection of a facility for isotope labelling, and training and hiring of qualified personnel (Hannesson 2008). However, this may not be an entirely altruistic act as Stefánsson emphasized the ‘importance of the PET/CT for medical research' (Ministry of Welfare Announcement 2015) implying that deCODE/Amgen expects to get research results from the PET/CT.

  5. As Greely (2000) puts it: ‘deCODE has gained an asset of speculative value—it may ultimately be worth billions, or it may be worth nothing…. Iceland has neither negotiated for a substantial initial payment nor a continuing interest. Its arrangement with deCODE may turn out to be very one-sided. …. these terms do present at least the possibility that embittered Icelanders eventually will wonder why their government gave deCODE an immensely valuable asset for so little return.’

  6. It has been argued that Icelanders could still demand fair compensation from Amgen by stopping any further use of their data either through legislation or mass public action (Árnason and Andersen 2013).

  7. The deCODE genetics S-1 registration with the Securities and Exchange Commission (deCODE 2000) gives several examples of head doctors at the Landspitali/University Hospital and deCODE collaborators having shares in the company and selling data including blood and DNA samples to deCODE. The proceeds went to these doctors and not to the hospitals. In return deCODE got ‘the exclusive and unrestricted right to (i) use all Original Data and Research Data for any purpose related to the Research and (ii) commercialize all products that result from the Research.' Also importantly the dean af the medical faculty is one of those holding a position that should be able to provide advice to the government. The then dean of the medical faculty of the University of Iceland, Prof. Guðmundur Þorgeirsson, was and is a deCODE collaborator and co-author on multiple publications and owner of deCODE stock options (e.g. Voight et al. 2012; see Conflicts of Interest). He also served on the Scientific advisory board of deCODE genetics.The current dean of the medical faculty, Prof. Magnús Karl Magnússon, also is a deCODE collaborator (e.g. Grétarsdóttir et al. 2010). Magnússon also appeared in numerous TV commercials and newspaper ads promoting the deCODE tissue and data sampling campain involving the Icelandic Search and Rescue teams which Capps refers to (c.f. Sigmundsdóttir 2014). He was joined there by other persons who are in a position to advice the government e.g. the Minister of Health, the honorable Kristján Thór Júlíusson. and the Mayor of Reykjavík, the honorable Jón Gnarr (Fréttablaðið 2014). 

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  1. Institute of Biology, University of Iceland, Reykjavik, Iceland

    Einar Árnason

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  1. Einar Árnason
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Correspondence to Einar Árnason.

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Árnason, E. Commentary on models of biobanks and implications for reproductive health innovation. Monash Bioeth. Rev. 33, 258–264 (2015). https://doi.org/10.1007/s40592-016-0054-2

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