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Foetal screening more widely applied in Finland than in other Nordic countries

Ethical discussion about right to life is lagging behind, says a Finnish sociologist


Foetal screening more widely applied in Finland than in other Nordic countries
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By Tanja Vasama
     
      Some five years ago, Mianna Meskus was sitting up half the night with her husband.
      Her pregnancy was in an early phase, and she was supposed to have an obstetric ultrasound scan on the following day.
      During the night she was gripped by uncertainty. Should she go to the foetal screening offered by the state-sponsored maternity care services - or should she not go?
     
Were the test to reveal something alarming, it could mean potential chromosomal abnormalities. In that case, the parents should prepare themselves for a baby with some development problems. The baby who was very much wanted.
      As such, the feelings aroused by the ultrasound scan came as no surprise to Mianna Meskus. As a sociologist at the University of Helsinki, she was well aware of the foetal screening, as it belonged to her field of research.
      However, this fact did not make her decision any easier.
      Eventually Meskus had the ultrasound scan done, and several months later she became a proud mother.
     
The 35-year-old Meskus has now completed her doctoral dissertation work in sociology, concentrating specifically on the introduction and development of prenatal screening within maternity care.
      The thesis entitled Elämän tiede (”Science of Life”) is to be published by the Vastapaino publishing company tomorrow - Monday. She will defend her doctoral thesis in June.
     
Meskus's thesis is a polemical document.
      Today, Finnish municipalities are obliged to offer all pregnant women voluntary prenatal screening, the purpose of which is to detect possible chromosomal abnormalities including Down's syndrome.
      Such screening is justified by the parents’ freedom to choose whether or not they are willing to parent a child with potential abnormalities, or whether they would rather wish to have the pregnancy terminated.
      One of the findings presented in Meskus’s study is the fact that such prenatal testing is also utilised according to health policy interests and economic calculations.
     
”Although it is generally assumed that society cannot interfere in the choices and decisions of parents, the system has been developed also with a mind to measures at the societal level: the avoidance of developmental handicaps and the costs that they incur. In the course of the past 30 years, speaking of costs has been regarded as ethically doubtful, while in the 1970s physicians openly wrote about the costs caused by disabled persons”, Mescus notes.
      Some people are likely to regard it as shocking that Meskus examines the relationship between foetal screening and racial hygiene or eugenics in the early 20th century.
     
In the early years of the last century, genetics focused on methods of "improving" the population.
      The data used by Meskus are comprised of medical articles, policy documents and committee reports, as well as popular guidebooks and health magazines.
      ”It is interesting to see how openly people were then analysed to be genetically bad or good”, Mescus says.
      Legislation played a key role in preventing the spread of poor genes in the early 20th century. For example, in the 1929 Marriage Act the statutory impediments to marriage also included mental illness and idiocy. Six years later, Parliament passed a bill on the sterilisation of mentally disturbed and imbecile persons.
      In contrast to the situation in many other European countries, sterilisations on racial hygiene grounds were deemed justified in Finland even after World War II.
     
In the Finnish experience, the change took place as late as in the 1960s, when involuntary sterilisations became morally dubious.
      ”When genetic research developed, it was no longer the thinking that one could permanently shape the genetic makeup of a nation. Instead there was an emphasis on early prevention of developmental problems or congenital abnormalities. New medical testing methods generated new possibilities of governing life”, Meskus reports.
     
Foetal screening was introduced as a tool to examine high-risk pregnancies.
      Since the 1990s, such scans have been offered as prenatal testing methods to all pregnant women. At the same time, genetic research has developed enormously.
      Meskus is unwilling to say whether or not she thinks that foetal screening is a new means of racial hygiene.
      ”There is an analogy between foetal screening and racial hygiene, but the relation between them is open to dispute, while both focus on the prevention of congenital abnormalities”, Meskus says.
      "At the same time, compulsory sterilisations focused on the simple and the mentally ill, and primarily on women in that category. Now the measures focus above all on pregnant women."
     
Meskus hopes that her study could lead to more open and frank discussions about these issues.
      She also believes that it would be useful to shed more light on the health policy interests of prenatal testing.
      "It would not necessarily make the choices of individual parents any easier. It might even make things more difficult, if people were aware that they were taking part in some kind of national savings campaign."
      In Finland, foetal screening is more widely applied than in any other Nordic country. For example, in Norway, testing for Down's syndrome has been regarded as questionable, as the quality of life of individuals with Down's syndrome has been thought to be so good.
      Down's syndrome is the best-known chromosomal disorder, which is often associated with some impairment of cognitive ability and physical growth as well as in facial appearance.
      People with the syndrome may also have other health problems, for example heart defects, and the majority require help on a daily basis even as adults.
     
The sociologist notes that she is not aiming to load guilt on the shoulders of the doctors. But she does stress that they cannot merely retreat into the role of technicians and escape the discussion when the public health service offers prenatal screening for all.
      "I've heard tell that the health system sometimes has trouble coping with the situation if someone elects not to go to screening, or if they do not go for further tests or decide they wish to keep a disabled baby."
      Then again, Meskus knows that some doctors are concerned that parents-to-be sometimes worry all too much.
      ”According to doctors, present-day parents often want to control risks to a greater degree than is considered justified or acceptable."
      People’s hopes of being able to anticipate the health and normality of their future children have exceeded the limits offered by medicine, Meskus writes.
     
Having worked on her dissertation since 2002, Meskus still finds it difficult to form her own opinion on prenatal testing.
      ”My aim is to open up controversial issues, not to take a stand for or against the continuation of foetal screening. However, based on one personal experience and on the ongoing online discussions, it is obvious that these kinds of ethical issues cannot be private. People wish to share decision-making with others”, Meskus argues.
     
     
Helsingin Sanomat / First published in print 24.5.2009


Links:
  University of Helsinki: Elämän tiede (incl. an abstract in English)
  Racial hygiene (Wikipedia)
  Down´s Syndrome (Wikipedia)
  Nuchal scan (Wikipedia)

TANJA VASAMA / Helsingin Sanomat
tanja.vasama@hs.fi


  26.5.2009 - THIS WEEK
 Foetal screening more widely applied in Finland than in other Nordic countries

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