Mapping the involuntary donation of human DNA in Iceland
A donation is a gift in every sense of the word, often regarded as a selfless good and expected to be voluntary, for free and anonymous, although it may raise various ethical, existential and even economical questions.
In the residency research project deCODE doNATION at SIM (samband íslenskra myndlistarmanna) in Reykjavik, Iceland 2015, the aim was to investigate donation as a critical and (un)-social practice in light of Iceland’s large genetic experiment conducted by the company deCODE.
The project is ongoing and subject to subsequent investigation. Due to the difficult and delicate nature of this project, researching and investigating the subject matter has proven to be a challenge. An exhibition proposal and a publication are being developed, further problematizing how traditionally Nordic cultural patterns such as solitude, homogeneity and purity in relation to identity and self-image.
Extracts from the research diary and attempts to map the complexity of the involuntary donation of human DNA in Iceland with drawings.
Core research questions
Could the national bio-ethnic registration of the Icelandic human DNA via “paid” donations (involving paramedics as door-knocking collectors), semi-legal aggregation of genealogical data (Íslendigabok) and pathological data (medical records) be described as a hi-res (self)-portrait of a nation? How can the economical, ethical, and aesthetic effects for the Icelandic people be described and how can a critical examination of these effects be conducted on an artistic level? How is the recent past with its turbulent political and financial crises affecting Iceland’s self-image? How does the booming tourism affect this self-image with new money and hypothetically also new blood?
deCODE doNATION is based on the collaborative film projects Gifted Men and Made in Denmark (with Nils Agdler), dealing with organised sperm donation from the male donor perspective. Many aspects of Gifted Men were based on donation regarding content, form and concept. Earlier focusing on Denmark – world leader in sperm trade – the project expands to Iceland as a distinct geographic, genetic and cultural haven, off the road for common European “fertility tourism”. Gifted Men and Made in Denmark also examined (sperm) donation as a business concept, its similarity to common un(der)paid artistic production conditions, in relation to quality measures. As engineered genome/sperm becomes available easier, cheaper and safer – what kind of future scenario is there for man and mankind in a post-human evolution?
The project involved fieldwork and case-study research to examine donation as a creative and critical practice in light of Iceland’s great genetic experiment conducted through deCODE, the economical crisis and its creative and social aftermath, and the surplus of Iceland’s narrative heritage and oral traditions. From the donative point-of-view deCODE and its ongoing debate in Iceland are fitting well into the continuation of the sperm donor project, yet with even more complex consequences.
deCODE’s foreground figure Kári Stefánsson has proven to be been a charismatic, influential and controversial figure. He has done much to popularize the issue through his appearances in the media. deCODE Genetics 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.
For a thorough critical study on deCODE read Árnason, Einar, and Andersen, Bogi (Feb 2013) deCODE and Iceland: A Critique. In: eLS. John Wiley & Sons Ltd, Chichester. http://www.els.net
Images from the group show “Scenery is dim” at SIM residency, Reykjavik, Iceland, April 2015.