The Sorting Society


Genetic screening technologies that map a wide array of a fetus' characteristics are continuously becoming more available. The result of implementing screening programs in public health services has been the near termination of births of children with Down Syndrome. In Denmark, these programs they have been celebrated as reducing the economic costs of taking care of a child born with Downs Syndrome.

Over the last year in Norway, we have seen a resurgence in the debate about screening programs. Currently the contentious issue revolves around a proposal by the governing Labor Party to initiate a program of prenatal ultrasound scans with various subsequent biochemical tests. The tests aim to ensure whether the fetus has Down Syndrome or not, along with other syndromes, like trisomy 18  and trisomy 13. The screening program is already offered in private health institutions in the biggest Norwegian cities.

Voluntary program?

The proposed screening program in Norway, expected to be implemented later this year, has a Danish predecessor. The combination of early ultrasound and subsequent testing has been offered to all pregnant Danish citizens since 2004. Denmark has, because of its cultural similarity and geographically proximity, been raised as a comparative case in the debate about the Norwegian policy.  In Denmark the optional aspect is all but gone, and is generally conceived by the pregnant women as an obligatory prevention project. Reviewing the birth statistics that result is a dreadful exercise. Every year since the introduction of the program, the birth of children with Down Syndrome has declined by 20 percent. 90 percent of the parents that are told their fetus has Down Syndrome, choose to abort the pregnancy. The result: an almost elimination of new borne with the syndrome in Denmark.

Earlier, programs like these were introduced by force. Today, in keeping with the spirit of the time, it is offered as a service. It is this “voluntary” aspect that is frightening. As a friend told me, “The really traumatic question is not whether the government or some other repressive organization ‘hides’ their coercion in 'choice' or 'service'. The really traumatic question is whether it is really conceived as a service. That we, out of our free will, wish eugenics, surveillance of abnormal behavior, or more police in the streets.”  “We need to let go of the paranoid thoughts in theorizing coercion and see how we already wish for and desire normalization, effectivization and the cleanliness of bodies,” he added.

Not a neutral technology

The entry of new technologies introduce a whole range of similar questions about the real motive behind certain politics. Surveillance cameras are said to document potential crimes, but can function as a regulator of behavior. The Data Retention Directive is said do the same thing, but operating on a much larger scale - in all electronic and public communication networks. It has been criticized having aiming at anything but the organized crime it ostensibly set out to control.

Even the simplest piece of technology has a normative set of actions, and is not remotely neutral. The wide range of prenatal testing available in Western countries might be perceived as something strictly technical or scientific, straight from the laboratory of medical progress. But on its way from the laboratory to the clinic, the connection between technology and morality is strengthened. The ultrasound scan and subsequent tests are embedded in the way the technology is organized and standardized, and ultimately, becomes a part of the national health system. The message behind this service is clear: To systematically detect all fetuses with Down Syndrome is worth the costs and effort, because we know that the ultimate consequence of the screening process will be the filtering out of (nearly) all of those fetuses.

Mass prognosis

The filter is the so-called informed decision of the parents, knowing that the fetus has Down Syndrome. Bearing in mind the national health institutions’ reasons for implementing and offering such a test – that is to map fetuses with Down Syndrome, among other syndromes – the responsibility of having a child with the syndrome is transferred to the parents, through the information obtained from the specific technology of prenatal screening. In fact, the whole test was originally designed to prevent the birth of children with Down Syndrome.

All these decisions are rightfully individual, but they bring about something that is new and frightening: the tracing and excluding on large scale, based on, say the Dutch academics Marcus Popkema and Hans Harbers, “not [...] on individual diagnosis, but on mass prognosis.” Popkema and Harbers underline the fact that, both the methodological standardization of the test, as well as its procedure of information, “are attuned to this massive scale.” They conclude that the tests “lead to a new ‘network of prenatal care’ from which nobody can ultimately escape.”

Economic rationale

The Danish authorities, for their part, do not disown such a network of prenatal care, they happily accede to it. A press release from the city of Copenhagen reads that, “it is expected that the screening will reduce the number of people born with mongolism (sic) from 12 to 2 a year. Calculations show that a mongol (sic) that lives at the average age of 55, cost the society 100 million [danish] crowns (approximately. €13,5 million).” The press release tells us that the yearly cost savings will be around €270 000.  Obviously, they are very pleased with the anticipated consequences of their policies.

While the local authorities of Copenhagen reduce a whole life to one single economic calculation, we have become familiar with such thinking in the other facets of life. In the everyday life of work and education, increased testing, measuring and comparison have become normalized.

The working life is an arena for cost saving and efficiency demands, rather than for cooperation and development. With the New Public Management regime and with the politics of “benchmarking”, this aspect has become even more apparent. People with unequal capacities, and with other preconditions that disadvantage them in economic competition, fall aside. 57 percent of all disabled people in Norway are without work, due to a variety of causes, but there are many reasons to believe that a strengthening of competition in society makes it harder that ever for people to participate on their own terms.

In this atmosphere we are seeing a surge of expressions like “loss of efficiency”, “double burden” (an expression used to describe receivers of social welfare in Norway) and,  “cost demanding users”. Economic pressure and the continued demand for competition is an integral part of the debate of the prenatal screening program. While politicians and other proponents of the Norwegian screening program won't recognize or express this, the Danish authorities are revealingly frank about it.

A real choice?

The question is always asked, whether most of us prefer eugenics, and prefer the power to choose to live a life without wheelchairs, stuttering, difficult walking, a big or small forehead, shorter legs, small noses or long tongues. But is this power to choose really conceived as a service for most of us? Is it because we long for a clean, normalized and efficient society, or is it more because we are forced into a life of competition, where these characteristics are desired and longed for?

One of the many remarkable results of the sorting debate, is that the notion of how we are expected to “fit into society” outweighs the idea that the society should “fit" its members. Unfortunately, we find ourselves only at the very beginning of this debate. New objects and techniques, deeply embedded with political and normative positions, will continue to raise the question of the agency of technology. Before long, we'll be able to map the whole genome of a fetus early in the pregnancy, and all debates we have known until now will look pale in comparison.

If we are not able to shape the outcome of these debates, the costs will be severe. The disability movement will be hit first, but ultimately all will suffer. A society based on competition, growth and a uniform criteria of success, will not only drain its natural foundations, but  will also drain its humans. In the Norwegian debate about the prenatal screening program, the social democratic government had a chance to make a solid stance indicating a clear direction, but failed. Now it's up to the rest of us to prepare for the debates that will follow.