Iceland, Blood and Science
Iceland: Blood, but Boundaries
Consider Iceland's recent national decision to allow its generations of genealogical data (and practices) and vast stores of medical information to be licensed to deCode Genetics for the purpose of gene discovery. After a broad-based public debate, employing democratic institutions including a free press and independent legislature, the country imposed limits on this new biomedical effort. Although the medical records and genealogical information will be turned over (under a system in which individual identities are to be concealed by encryption) on the basis of presumed consent, the collection of genetic information from volunteers will be constrained by the principle of research-subject self-determination, allowing individuals to withdraw from participation at any time. The licensee is legally liable for misuse of the newly created data base. Participants who provide blood for DNA analysis are to give noncompelled consent, and fair compensation has been negotiated for research subjects and the nation. These and other issues (some of them rights in the context of the Nuremberg Code) are regulated by national legislation and time-limited contracts.
Change will surely take place in cultural and social practices as the commercialization of genetic studies and the ownership of genes and their information develops in this small, unusual setting. But, in this case, the construction of science and its associated enterprises by the people of Iceland is paradigmatic; it represents an example of the assertion of national principles and sovereignty over international science and biotechnology. The outcome of gene hunting in Iceland may be better in the end in Iceland than in North America or Europe.
The Icelanders are hardly the first group to come under special scientific scrutiny. Indigenous peoples, for many reasons including their isolation, social and cultural practices, may be a source of interesting or useful human scientific data. Scientists increasingly find that such people are unwilling subjects. Many have overwhelming social or political burdens, have suffered under colonial practices, reject the role of Western science in their lives and society, and see no tangible or culturally acceptable benefit to be gained by allowing the practice of science in their midst. Unlike the Icelanders, often they cannot negotiate an acceptable contract—or their beliefs or conditions do not allow such a bargain to be struck. Indigenous peoples are therefore vulnerable and suspicious, and they may reject science or its methods.