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Iceland, Blood and Science

Paul Billings

In the annals of science's interactions with society, the 1990s may well be recalled as the decade when tools to manipulate human biology and the environment grew powerful enough that society was forced to confront its ability to alter long-established human systems. This capability is hardly new: From the splitting of the atom to the Industrial Revolution or major transitions in agricultural techniques, science has changed lives and societies over the millennia. But new genetic technologies touch us where (as well as how) we live; they interact in novel ways with our lives, our cultures and our identities. The policies and norms that have grown up on the science-society interface do not address many of the new challenges.

A fundamental consideration as society adapts to these developments is the role that science, and scientific ways of thinking, should play in social decision making. Is scientific rationalism a proper basis for social and political actions? Or do other systems of experience still outweigh scientifically established methods and facts? Should, for instance, society still strive to treat people equally in terms of basic rights and entitlements, despite ever-increasing amounts and varieties of biological data proving that we differ? Given the social and moral content of such questions, it may be paradoxical but true that scientific activity will flourish best in an environment of well-conceived restraints and limits on its conduct and power. These constraints may and should vary across cultures.

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.

Indigenous Peoples: Blood and Barriers

Consider the example of the 500 indigenous tribes that live in the United States and Canada in semiautonomous relationships with the federal governments. Tribal membership (a variant form of national citizenship) confers on individuals certain special rights and benefits in addition to those extended with standard citizenship. A significant entitlement granted to tribal members is the right to own land in special areas.

Inclusion in tribal membership is determined by two competing systems, one official and federal, and the other traditional. The federal system, used to determine special benefits such as land ownership, uses two differing representations of evidence to establish inclusion. One involves "blood quanta," a quasi-quantitative calculation of biological relatedness based on family information (not biological tests).

In an idealized example of this method, the genes of "full-blooded" individuals match at all tribal-associated sites in the genome. Blood quanta are surrogates for genetic connections to the tribe much as genetic information can be a substitute for links to race, ethnicity, creed and other social groupings. Individuals carry an official tribal identity card that may read 8⁄32 Sioux, 16⁄24 Hopi and so forth. Such "quanta" systems have a long and sad history, having been associated with societies where racism was institutionalized and intermarriage often illegal.

A second method used in federal determinations of tribal membership also relies on family history. Applicants must carefully document descendancy from certain identified tribal families. Several types of evidence of direct relatedness are accepted. Nonmembers of the tribe originally determined which founder families were selected to compose its original organization. Both systems employed by the federal governments reflect principles of the science of population genetics described early in this century.

The traditional system of membership determination used by the tribes themselves is another matter. (It has no legal standing in terms of the granting of special federal benefits.) It utilizes traditions, which vary from tribe to tribe, and other culturally acceptable conventions to make inclusion decisions. Over the years, many tribes have granted membership to adoptees, immigrants from nonindigenous communities and to members of other tribes.

Science now offers DNA-based methods that theoretically could be applied to determinations of tribal membership. Genetic polymorphisms that are common to specified tribes or their subgroups, or that are inherited in the descendants of the founder families, might be identified. A more reproducible and easier-to-quantify application of molecular biological techniques could replace the current federal systems with their undesirable histories and problematic data sources. Such a system would be "rational." But would it be appropriate?

The fascination with "blood" in society—"bad blood," "low blood," "good blood," "mixed blood," "blood sports" and other linguistic representations—suggests cultural views of relatedness not necessarily appreciated by simple scientific definitions. Kinship and clan membership mean more than just related by blood. The precision of DNA analysis may be attractive to government bureaucracies that find estimating blood quanta or family ties cumbersome or nettlesome. Yet any DNA-based reform, like the current federal systems, would tend to exclude the heterogeneity and variation present in tribes. This diversity originates from practices of determining tribal membership based on culture and tradition. The limitation of DNA-based methods and the discontinuance of current flawed systems with their sorry pasts might be welcomed by indigenous peoples in North America.

Only these people and their tribal organizations are competent to determine their membership; these determinations should make use of whatever data or evidence they see fit consistent with their traditions, cultures, systems of belief and knowledge, and universal notions of basic human rights. In this case, the application of a scientifically derived method would tend to exclude those traditionally included and serve to reinforce an unjust political relationship that does not deserve that buttress. The outcomes of these two deliberations within cultures may look quite different, but the lesson is the same. In each case, a group is seeking a balance between scientific and cultural concerns that represents for them a socially just outcome.

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