ABSTRACT
In a research setting (TRIDENT-2), Dutch pregnant women undergoing prenatal screening for trisomies 21, 18 and 13 with the Non-Invasive Prenatal Test (NIPT), are offered the choice to also receive information about incidental findings. In a recent report, the Health Council of the Netherlands has recommended to retain this option, but to only report those incidental findings that very probably will lead to serious health outcomes for the child. A working group has been appointed to draw up a guideline for this. In this article we argue that actively searching for desired 'incidental findings' in fact amounts to broadening the scope of the screening and that a justification of this choice is still lacking. A core issue is whether the benefits of such broader screening outweigh the drawback of inevitably also generating findings that do not fit in with the aim of the screening: providing meaningful reproductive choices.
Subject(s)
Down Syndrome , Prenatal Diagnosis , Child , Down Syndrome/diagnosis , Female , Humans , Mass Screening , Netherlands , Pregnancy , Pregnancy Trimester, FirstABSTRACT
Publishing a patient history or case report fulfills an important role in education and scientific research. However, this requires proper privacy protection. The main rule is that it must be nearly impossible to identify a patient in the presented case. If complete anonymity is not a possible, or if this is doubtful, publication is only possible after the patient's informed consent. But what if such authorization cannot be obtained, e.g. after a patient's death, or due to unknown whereabouts? In such a situation it should be possible to publish these cases, but only after careful consideration of all interests by authors and editorial board, possibly including opinions of the next of kin.
