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100 Women’s responses to proposed genetic carrier screening for cystic fibrosis in pregnancy in Denmark: a case study informed by individual interviews
  1. Louise Bidstrup Jørgensen1,
  2. John Brandt Brodersen1,2,
  3. Alexandra Brandt Ryborg Jønsson3
  1. 1Centre of General Practice, Department of Public Health, University of Copenhagen, Copenhagen, Denmark
  2. 2Primary Health Care Research Unit, Region Zealand, Denmark
  3. 3Department of People and Technology, Roskilde University, Roskilde, Denmark


Objective Almost all pregnant Danish women participate in the prenatal screening program offered through the healthcare system. As reproductive technology evolves, the demand for prenatal genetic testing within the private and public healthcare systems increases. In 2020, this led to a legislative proposal of expanding the prenatal screening program with a three-step prenatal genetic carrier screening for cystic fibrosis (CF). This study aimed to explore Danish pregnant women’s reflections and reactions to a proposed genetic carrier screening program for CF; how they perceived the benefits and harms of knowledge, the potential consequences for pregnancy termination, and their opinion about the potential implementation of the screening program.

Methods We conducted qualitative semi-structured interviews with 11 Danish women aged 23-36. We conducted 9 interviews online and two face-to-face at the informant’s home. All interviews were recorded, transcribed verbatim, and thematically coded and analyzed using Attride-Stirling’s model.

Results Results indicated that the majority of participating women accepted prenatal offers as a default and not as something they had a choice about accepting. The women would participate in genetic carrier screenings if invited by their general practitioners. The women also expressed great concerns about the speed and direction of the development of prenatal- and carrier screening. The first step of the proposed CF screening estimates to identify around 2000 screen-positive women a year. The next step implies testing the partners of these women which would identify 60 screen-positive couples. These couples would get offered a chorion villus sampling in order to determine if the fetus is CF-positive. There are 12 children born with CF yearly. Thus, the proposed screening program would lead to an overscreening of 1940 women and 48 men a year.

Conclusion Although there is a desire to know as much as possible about their unborn babies the women also expressed a general concern about the extent and development of prenatal- and carrier screening.

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