Iceland's database is ethically questionableBMJ 1999; 318 doi: https://doi.org/10.1136/bmj.318.7197.1565 (Published 05 June 1999) Cite this as: BMJ 1999;318:1565
- Bogi Andersen, assistant professor of medicine.,
- Einar Arnason, professor of evolutionary biology and population genetics.
- University of California, San Diego
- University of Iceland
Last December the Icelandic parliament, Althingi, passed an act on a health sector database. The legislation was instigated by a Delaware corporation, deCODE, a biotechnology company operating in Iceland (2 January, 11).
The company will receive an exclusive licence to construct a database containing the entire country's health records and permission to combine and analyse them with genetic and genealogical data.
“Some issues … should be left out of politicians' hands”
The Icelandic government and deCODE maintain that the project will uphold patients' rights and conform to international obligations and will serve as a model for similar databases elsewhere (20March, p 806).
Few geneticists dispute the usefulness of databases. Rather, the debate focuses on how deCODE, through the act, has been permitted to break fundamental principles of scientific conduct: the requirement that research plans should be evaluated and approved by independent ethics committees before recruiting patients for studies. Without submitting a …