Less risky prenatal screening

Widening the scope of screening by non-invasive prenatal testing (NIPT): A sociotechnical analysis

RESEARCH QUESTIONS

  • What are the constraining and enabling factors for the implementation process of NIPT for fetal aneuploidies (testing and screening) in the present (Dutch) prenatal care system? What are the causes of (persistent) problems?
  • What sociotechnical conditions or strategies on micro-, meso- and macro-level can be identified for a successful implementation? (How) will developments starting in a niche be taken up by stakeholders changing the current landscape of a national Down syndrome screening program in a process of attunement between all actors involved?
  • How can attunement (partnership) be achieved between the stakeholders involved in the implementation of new possibilities for prenatal testing both on the short term (testing for aneuploidies), and on the long-term (exploring the dynamics of NIPT)? What is needed for a publicprivate- patient-professional-partnership with regard to NIPT?

Duration: Janauary 2013 - present. 

SUMMARY
In the Netherlands, prenatal screening – determination of the risk of a congenital disorder in a fetus – is concerned with, among other things, chromosomal disorders of which Down syndrome (trisomy 21) is best known. So far, invasive procedures like CVS or an amniotic fluid test are required for a definitive diagnosis. These procedures are not without risk; 1 in 200 to 300 cases result in miscarriage. However, since 2011 a DNA test is available that can diagnose Down syndrome in the fetus based on a blood sample of the pregnant woman. The benefits of such a non-invasive method (NIPT: non invasive prenatal testing) seem evident. 

At the same time the adoption of NIPT can imply a radical change in the way we look at prenatal screening. Without doubt, the number of diseases and disorders a fetus can be tested for shall increase in the near future. In addition to severe non-treatable congenital diseases, possibilities for screening on less severe diseases, on diseases that manifest oneself later in life and on prenatal risk factors for mother and fetus that enable a better monitoring of the pregnancy, will gradually appear. 

By means of a sociotechnical analysis, this one-year project will map which factors either hinder or promote a successful introduction of NIPT. Parallel to this CSG project, a project funded by ZonMW focuses on how pregnant women and their partners think about this new testing method. Both projects are united under the name ESPRIT (Ethical Social Psychological Research for Implementing Screening for fetal Trisomies).