The Icelandic Health Sector Database
Eirikur G. Guðmundsson, National Archives of Iceland
The most comprehensive gathering of data in Iceland to date is the assembly of the so-called Icelandic Health Sector Database by Íslensk Erfðagreining (a subsidiary of deCode Genetics). The Data Base is also the most controversial undertaking of this kind in Iceland. It has also received considerable attention from the media and been the focal point of ongoing debates in the Western World. Consensus has still not been reached on this database and perhaps it will always be an issue of controversy.
What is The Icelandic Health Sector Database?
DeCodes homepage offers the following description of The Icelandic Health Sector Database:
On December 17, 1998, Althingi, the Icelandic parliament, approved legislation enabling the Ministry of Health and Social Security to grant a license to create and operate an Icelandic Health Sector Database (IHD). On January 22, 2000, Islensk erfdagreining ehf., the Icelandic subsidiary of deCODE genetics, was awarded a 12-year license to build and run the IHD. The IHD differs from similar projects elsewhere in one important respect: its nationwide scope. The database will collect information from anonymized patient records from Iceland’s national health service and store the data in a secure computer system for clinical and statistical analysis. The license also permits deCODE to cross-reference IHD data with the company’s genealogical database and genotypic data obtained and analyzed with the informed consent of Icelandic donors. The linkage of these three resources will create a powerful analytical tool called the deCODE Combined Data Processing system (DCDP). The DCDP is expected to open up new avenues of medical research and facilitate the development of technologies leading to:
- Faster diagnostics, allowing for earlier treatment or changes in lifestyle.
- Customized treatments, specific to disease subtype and with a lower risk of side-effects.
- Better-informed, more cost-effective disease management strategies.
- More accurate drug-targeting, leading to more effective, tailor-made treatment regimes.
The Paper will address three aspects of the issue.
Historical and Documentary Prerequisites
IHD will, as outlined above, contain information from patient records created by the Icelandic national health service. DeCode’s genealogical database is also a fundamental issue that needs to be addressed in this context. Icelanders are a small nation. The population is now 280.000. The nation’s origins are homogeneous and through the centuries there was little blending with other nations due to the remoteness of Iceland and its inclement climate. The nation, thus, offers an interesting genetical entity. On average an Icelander is related to another Icelander going back 6-7 generations. Most of the genealogical data, made use of in creating the genealogical database, is lodged in the National Archives, primarily censuses and church records.
The census of 1703 recorded the population of Iceland, by name, age, family status, occupation and domicile. The census is fully preserved in the original and is believed to be the oldest census which so thoroughly records a whole nation.. Since 1703 Icelanders have been counted and recorded in censuses and church records which have as a rule been well preserved. These records form an impressive whole. Such gaps as exist in the records have been largely filled by the aid of various genealogical works compiled in centuries past, as genealogical research has for long been a favourite pastime of scholarly inclined Icelanders. In a small homogeneous, inter-related, and closely related society, such genealogical knowledge was indeed a necessary undertaking in order to determine which couples could legally be married. In addition to the genealogical data, information from medical records is required. Recent medical records are lodged in the health care institutions themselves. For the past 20 years the IT revolution has considerably altered the recording of such data. Older medical records are preserved in the National Archives.
It was on the basis of these rich and important data sources that the scientist Kári Stefánsson founded a company to conduct research based on a database containing information from genealogical and medical records. This undertaking is much more comprehensive than previous research programs partially utilising these sources.
Main Points of Contention
The creation of the database has given rise to many objections and sparked debate on ethical issues and technical matters. The ethical issues concern the individual’s right to privacy as well as the privileged and confidential relationship between doctors and patients. Many doctors have refused to hand over medical records for use in creating the database because they feel it constitutes a violence of the Hippocratic oath. DeCode’s monopoly rights have also been disputed and the issue of access to the database for the scientific community has also been controversial. Some have argued that the monopoly licence gives the holder an unfair advantage over others engaged in the field. The technical aspects mainly concern the security of the collected data, especially the encrypting of personal information.
Preservation and Access in the Future
As the IHD is regarded as the property of the Icelandic state, according to present laws, it will become the future responsibility of the National Archives to preserve the database as a public document, unless it is decided to destroy the database after us, if it is taken out of use. What problems will arise regarding the preservation and future access?
Bibliographical references
- http://brunnur.stjr.is/interpro/htr/htr.nsf/pages/gagngr-log-ensk
- http://www.personuvernd.is/tolvunefnd.nsf/Files/7163.method.../$file/7163.method.pdf
- http://www.personuvernd.is/tolvunefnd.nsf/Files/SecurityTarget/$file/SecurityTarget.pdf
- http://www.decode.is/resources/ihd/
- http://www.decode.com/resources/ihd/
- http://www.decode.com/resources/papers/
- http://www.mannvernd.is/greinar/cbsnews.220401.html
Biographical information on the speaker
Eirikur G. Gudmundsson, Director of IT and Publication in The Icelandic National Archives since Feb. 2001. Formerly a headmaster of a secondary school in Reykjavik. Education: BA in History and BA in Icelandic. Further studies in History at The Universities in Reykjavik and in Copenhagen. Emphasis on fishing communities in Iceland in the 18th century. Has published some textbooks for teaching and one historical survey on a commune in West Iceland along with two colleagues.
E- mail eirikur@archives.is. Tel.+354 562 3393. Fax: +354 552 5720.