Cyprus: How One Nation’s Culture Influences Its Genes
Although there is a growing literature on ethics and genetics, surprisingly little of it deals directly with how ordinary people have fit this new knowledge and ethics into their lives. How culture influences the use of genetic services is only rarely taken into account.
An anthropologist might ask: How much do people understand about genetics? How do they confront risk? How do they plan? How influential is the impact of genetics on previous patterns of life? The literature dealing with these topics outside of the US and Europe, in particular, is almost non-existent.
The work of a young German anthropologist, Stefan Beck (of Berlin’s Humboldt University and currently a visiting assistant professor at the University of California at Berkeley), provides a rich addition to our understanding of these issues.
Beck has carried out detailed ethnographic fieldwork on the changing cultural and social context of beta thalassemia, an inherited blood disorder that results in anemia, in Cyprus – a nation in which one in seven individuals harbors a genetic mutation for the disease and in which institutions such as the Orthodox Church play a strong cultural role.
(While carrying a single mutation usually does not result in a significant health impact, carrying two can end up in severe, often lethal, health effects. In Cyprus, one in 158 newborns runs the risk of carrying two mutations associated with beta thalassemia mutations.)
The lives of Cypriots with beta thalassemia have changed over the years. Improved health care during the last several decades has dramatically increased life expectancy for those with two mutations associated with beta thalassemia from three or four years to almost thirty.
These extended life expectations, however, have come with a hefty cost to this small Mediterranean nation. They have placed enormous demands on care-giving institutions, for example, resulting in crisis proportions in terms of shortage of blood for transfusions. And they have contributed to an astronomical rise in medical costs, threatening the very existence of the entire health care system of Cyprus.
In an effort to reduce the incidence of newborns with two mutations associated with beta thalassemia, acting on a recommendation from the World Health Organization in 1973, the Cypriot government established a policy of compulsory carrier screening and counseling which was actively supported by the Orthodox Church of Cyprus.
(The role of the Church was crucial because engagement and marriage of Cypriot couples requires blessing and a certificate from the Church.)
Although two carriers are free to marry, Beck’s research suggests they are unlikely to do so anymore. Today, the number of children born with thalassemia in Cyprus is virtually zero. This shift has had dramatic effects in Britain, as well, where young Cypriot immigrants follow the same pattern.
As Beck writes in a forthcoming text, “The obligatory screening and counseling for Thalassemia in Cyprus is one of the most successful public health programs – but it violates all existing ethical norms. It is obvious that this program is successful because it violates the bioethical rules formulated by international agencies and associations of geneticists.”
Among the Cypriots, the testing is basically compulsory, not voluntary. It is driven by an epidemiological approach to the population, not the individual as the fundamental unit. Counseling is directive, not non-directive. The result is eugenic.
In this instance, an adaptive culture has ignored international bioethical norms – in the name of health and prosperity.
For additional information on thalassemia screening in Cyprus, see Beck’s chapter in the forthcoming text:
Putting genetics to use. Inquiring into the interface between scientific knowledge and vernacular culture. In: Floya Anthias (ed.): Cyprus into the New Millennium, forthcoming.
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