Abstract
In 2008, like an overheated nuclear reactor, Iceland’s banking sector melted down. After investors pulled money out of Iceland en masse, the Icelandic government took control over the last and largest of the country’s three major banks and shut down the stock exchange.
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Notes
- 1.
This book is an important in-depth look at deCODE with an anthropological lens (Fortun 2008).
- 2.
Act on a Health Sector Database no. 139/1998 (Passed by Parliament at 123rd session, 1998–1999). Art. 1, http://ministryofhealth.is/laws-and-regulations/nr/659#allt.
- 3.
A Bill on a Health Sector Database was first submitted to the Althing in March 1998, and debated at several sessions. There was immediately strong opposition to the bill from large sections of the clinical and biomedical research communities in Iceland, which led to the Bill’s withdrawal. A second draft of the bill was introduced in late June 1998, with a number of changes. This version was the one that was enacted in December 1998.
- 4.
Tómas Zoëga. 1999. Interview by Paul Wouters. Science Channel, Netherlands. Transcript on file with author. Zoëga was Chair of the Ethical Council of the Icelandic Medical Association at the time. In response to the Icelandic Medical Association’s opposition to the Bill in the summer of 1998, David Oddsson remarked that “privacy standards were so lax in Icelandic health institutions that it was hypocritical of the IMA to oppose the HSD Bill on the grounds that it threatened the doctor-patient confidentiality.” See Skúli Sigurdsson, “Yin-Yang Genetics, or the HSD deCODE Controversy,” New Genetics and Society 20, no. 2 (2001), 103–117.
- 5.
Mannvernd, “about Mannvernd,” www.mannvernd.is/english/. Accessed Spring 2006. Website currently inactive.
- 6.
The Notes to the Bill state that “[d]ue to the nature of the data and their origin [Icelandic health records] cannot be subject to ownership in the usual sense. Institutions, companies or individuals cannot therefore own the data [because t]hey exist primarily due to the treatment of patients.” Bill on a Health Sector Database (Submitted to Parliament at 123rd session, 1998–1999). On file with author.
- 7.
- 8.
Defined by Ernst Mayr in 1963 to be the genetic effect of establishing a new population by a small number of individuals, carrying only a small fraction of the original population’s genetic variation and whereby the new population may be distinctively different, both genetically and phenotypically, to the parent population from which it is derived.
- 9.
The ways in which the company’s factual claims about Iceland’s genetic homogeneity came under attack will have to be saved for another article. While Stefansson used such claims to naturalize his business narrative, some Icelandic geneticists later attacked these claims as factually incorrect, both in public talks and scientific studies (Árnason et al. 2000; Árnason 2003; Abbott 2003). DeCODE’s scientists countered with more of their own studies (Helgason et al. 2003).
- 10.
deCODE Business Plan, 8. These records already existed due to what one Icelandic anthropologist has described as an Icelandic “fascination” with genealogical trees and family histories that is “extreme” (Pálsson 2002).
- 11.
These technologies included PCR and high-through-put sequencing (Rabinow 1996).
- 12.
Sequana Therapeutics at that time was a young biotechnology company with a strong venture component. It merged with Arris in 1997 to form AXYS Pharmaceuticals, which in turn was acquired by Celera Genomics.
- 13.
On file with author. Also quoted in Greely (2000).
- 14.
DeCODE Genetics, “Public Corporate Summary Sheet” (2000). On file with author. The original U.S. venture firms to commit included Advent International, Alta Partners, Atlas Venture, Arch Partners, Falcon Technologies, Medical Science Partners, and Polaris Venture Partners.
- 15.
For a useful account of the enclosure movement in its historically land-oriented form and in its recent expansion into informational realms, see Boyle (2003).
- 16.
This information is contained in Gudni Jóhannesson’s treatment of the deCODE history in Icelandic (Jóhannesson 1999).
- 17.
Benchmark payments are of course conditional upon achieving those benchmarks, although this $200 million was often spoken of as if it were hard cash.
- 18.
Anthropologists Gísli Pálsson and Paul Rabinow consider the 9-month debate leading up to the passage of the Act to be a model in terms of democratic engagement and deliberation (Pálsson and Rabinow 1999, 2001). Other commentators have been deeply critical of this position (Sigurdsson 2001). See also Michael Fortun, “Open Reading Frames: The Genome and the Media” stating that “the vast majority of those hundreds of media accounts that are cited as evidence of a democratic debate in Iceland were little more than dressed-up deCODE press releases issued on a regular basis, passing on messages about jobs for Icelanders, predictions of wealth in the national coffers, and pieties about how Iceland would contribute to the improvement of world health and the universal progress of biomedical research” (Fortun 2001). Reprinted in After the Fact, the publication of the Institute for Science and Interdisciplinary Studies (Summer 2001) and by the Council for Responsible Genetics, http://www.gene-watch.org/genewatch/articles/14-6fortun.html.
- 19.
The most famous novel of Icelandic Nobel Laureate Haldór Laxness, Independent People, deals with this theme, linking one farmer’s struggles to remain financially independent to questions of national character and collective independence. See Einar Árnason and Frank Wells, “Iceland and deCODE: A Critique,” in Encyclopedia of the Human Genome (who mention Iceland’s “fear of engulfment” (Árnason and Wells 2003).
- 20.
Icelandic Constitution, Article 71 (“everyone has the right to respect for his private and family life and his home”), http://government.is/constitution.
- 21.
United States Securities and Exchange Commission, Form 10-K, fiscal year ended December 31, 2003, 49.
- 22.
It is interesting to note that this idea of cultural context and democratic will was adopted by a pair of cultural anthropologists studying the controversy, one from the University of Iceland, the other from University of California at Berkeley. See note 16.
- 23.
- 24.
The proposed encryption architecture was contained in Appendix VI of the Bill on a Health Sector Database, and had been prepared by an Icelandic information technology company, Stiki hf. See Arnodóttir, “The Icelandic Health Sector Database,” 332, n. 73.
- 25.
This standard comes from Recommendation R (97) 5 on the Protection of Medical Data, pursuant to the 1981 Council of Europe Convention for the Protection of Individuals with regard to Automatic Processing of Personal Data.
- 26.
Icelandic Government Regulation on a Health Sector Database, Article 30.
- 27.
DPC personnel, in discussion with the author, Reykjavik, July 2003.
- 28.
United States Securities and Exchange Commission, Form 10-K, fiscal year ended December 31, 2002, 7.
- 29.
Gudmundsdóttir v. the State of Iceland, No. 151/2003 (Nov. 27, 2003) (Ice.).
- 30.
Ibid. at Sect. I.
- 31.
Icelandic Constitution, Article 71, http://government.is/constitution.
- 32.
See CARTaGENE website, http://www.cartagene.qc.ca/.
- 33.
In this Declaration, the WMA affirmed as its first principle that “the right to privacy entitles people to exercise control over the use and disclosure of information about them as individuals,” and that “[t]he privacy of a patient’s personal health information is secured by the physician’s duty of confidentiality.” Further, it was affirmed that as a general rule, “patient’s consent is needed if the inclusion of their information on a database involves disclosure to a third party or would permit access by people other than those involved in the patients’ care”.
- 34.
As an example of the rulings international reach, the Harvard Law Review featured an extended case note on the case heralding the fact the “Gudmundsdottir Court appears to be the first to recognize that someone other than the source of genetic information—the proband—has a legally cognizable privacy interest in the proband’s information.” Recent Cases, Harvard Law Review 118 (2004), 810–817.
- 35.
These idealized norms were classically formulated by the sociologist Robert K. Merton in his essay “The Normative Structure of Science” (Merton 1973). For the classic statement of the thesis that “science” is a model polity, see Michael Polanyi, “The Republic of Science” (Polanyi 1962). For excellent modern treatments on the constitutive role of science in modern democratic order, see Yaron Ezrahi, The Descent of Icarus: Science and the Transformation of Contemporary Democracy (Ezrahi 1990).
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Winickoff, D. (2015). A Bold Experiment: Iceland’s Genomic Venture. In: Mascalzoni, D. (eds) Ethics, Law and Governance of Biobanking. The International Library of Ethics, Law and Technology, vol 14. Springer, Dordrecht. https://doi.org/10.1007/978-94-017-9573-9_13
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