deCODE and Iceland: A Critique

Abstract

deCODE Genetics Inc. was a for‐profit American corporation built around the idea of cloning and characterising the genes of Icelanders and marketing the information so obtained through a central database containing health information, genetic information and genealogy. deCODE's database plan in Iceland brought into focus business practices of the genomics industry and a number of ethical issues. The company promoted and sold its shares to the public in Iceland through a ‘grey market’ before its initial public offering, leading to large investment losses for common Icelanders with little investment experience. The law permitting the health sector database was found unconstitutional and the company never built the controversial database. Instead it pursued traditional genome‐wide association studies attempting to identify genetic changes contributing to common diseases. Through this work, the company created a large database and contributed a large number of scientific papers, but was a commercial failure going bankrupt in 2009. After a stalking‐horse sale it rose from the ashes and continued operation as a private company under almost the same name, focusing on whole genome sequencing data to understand common diseases and human variation. At the end of 2012, Amgen announced that it would pay $415 million to acquire deCODE. The sale price was based on a product derived from an Icelandic resource but no compensation was given to the Icelandic people.

Key Concepts:

  • deCODE was founded on the belief that unifactorial methods of searching for identity by descent in extensive pedigrees, so important in searching for Mendelian traits, would yield the genetics of common disease.

  • The genetic variants in most current GWA studies only explain a portion of the heritability.

  • Multiple variants, each with a small effect, seem to contribute to common diseases.

  • Rare genetic variant conferring a larger effect may also contribute to common diseases.

  • As a foundation for a commercial company, the identification of genetic variants in common disease was a failure for deCODE Genetics.

  • deCODE lays claim to a number of scientific papers but turning the science into a profitable busienss failed.

  • deCODE Genetics Inc. employed questionable business practices when raising funds from the public in Iceland.

  • The health sector database law in Iceland was found to be unconstitutional and deCODE Genetics never built the database on which its initial public offering was based.

  • deCODE Genetics Inc. declared bankruptcy but rose from the ashes after a stalking‐horse sale to a company partly owned by some of initial investors and by sequencing giant Illumina. It now operates under the name deCODE Genetics ehf. In December 2012 deCODE was purchased by Amgen and is now operated as a wholly owned Amgen subsidiary.

Keywords: medical records; health sector database; genealogy; ethics; informed consent; fair compensation; privacy; biotechnology; human genetics; questionable busines practices

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Annas G (2000) Rules for research on human genetic variation – Lessons from Iceland. New England Journal of Medicine 342: 1830–1833.

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Árnason, Einar, and Andersen, Bogi(Feb 2013) deCODE and Iceland: A Critique. In: eLS. John Wiley & Sons Ltd, Chichester. http://www.els.net [doi: 10.1002/9780470015902.a0005180.pub2]