Fetal ultrasound examination and assessment of genetic soft markers in Sweden: are ethical principles respected?

Objective To explore procedures for providing information, assessment and documentation about ultrasound soft markers in Sweden. Design Descriptive, quantitative, cross-sectional survey. Sample Eighty-two percent of all obstetric ultrasound clinics in Sweden (covering >90% of routine fetal ultrasound examinations). Methods Postal questionnaire survey between December 2010 and January 2011. Main outcome measures Items about provision of information, risk estimation, and follow-up strategies in relation to observed ultrasound soft markers. Results More than 96% of all fetal routine ultrasound examinations were performed at 15-21 gestational weeks, primarily by midwives. Half of the clinics replying wanted prospective parents to be provided with information, but 38 (78%) of the clinics did not routinely inform about assessment of soft markers before the examination. Follow up and decisions on whether to give information when soft markers were found were based on the number and type of the observed markers, whether other structural deviations existed, and on the woman's age and anxiety level. Only at eight clinics (17%) were parents informed about all soft marker findings. At 13 clinics (28%) observed markers were documented/recorded, even though the women were not informed. Conclusions Information regarding the assessment and importance of observed soft markers seems to be inconsistent and insufficient. Provision of information and documentation of findings appear to be handled differently at obstetric ultrasound clinics. This suggests that Swedish ethical principles relating to healthcare and ultrasound examinations are incompletely followed and national guidelines appear to be necessary. [ABSTRACT FROM AUTHOR]