Bare en blodprøve? Gravide kvinners meninger om fosterundersøkelse ved hjelp av foster-DNA i mors blod - en kvalitativ studie

Abstract

ABSTRACT Introduction: In the prenatal diagnosis some countries use a new screening-test called Noninvasive prenatal testing (NIPT). The Norwegian Directorate of Health wants to introduce the NIPT into the national prenatal diagnoses program, but the government has not allowed this yet. NIPT analyzes cell-free DNA circulating in maternal blood. With only a blood draw from the pregnant woman it is possible to get information about the fetus – is there any risk of chromosomal aneuploidies such as trisomy 13, 18 or 21 for example? The testing can be done from the 10th week of pregnancy. It does not involve any risk to the pregnancy. The debate of legalization raises ethical problems. Who should get the test? What kind of information should the women have a right to know about their unborn child? Would more women choose to have a termination of the pregnancy? Would it change our behavior towards those already born with chromosomal aneuploidies? As a contribution to the debate of whether to introduce NIPT, the opinions from pregnant women are important. Methods: This is a qualitative study. 10 pregnant women were interviewed using a semi structured interview. The women were presented with three fictitious close-to-reality cases and were asked to answer some associated questions. The aim of the study was to expose the attitudes of pregnant women concerning NIPT, as well as the thoughts and feeling about introducing the new prenatal test. Results: All of the women who were positive to prenatal testing would have preferred to be offered NIPT instead of the prenatal diagnostic tests presently offered. There was disagreement whether or not every pregnant woman should be offered prenatal testing, or if the offer should remain the same as it is today – an offer to pregnant women aged 38 or older, or with special risk factors. All of the women agreed that there would be an increased risk of abortion if prenatal testing were offered to pregnant woman in all ages. If all pregnant women get the opportunity to test their fetus, some of the women thought that there would be a possible risk of a more difficult life with functional disabilities – fewer to share experiences with and fewer groups to research on. On the other hand if there were born fewer children with disabilities, there would be fewer to share resources with. The women were asked questions about if they would have continued with the invasive amniocentesis if the NIPT were positive - seven of the women would have proceeded with invasive testing to confirm the diagnosis, despite the risk of miscarriage. Conclusion: The women in this study do not take the prenatal testing and ethical problems lightly – they have given serious consideration to why they want to test the fetus, and to the consequences.