Facilitating informed choice in prenatal testing: How well are we doing?

There is a consensus that prenatal testing services need to provide the inf ormation and support necessary for women to make informed choices about pre natal testing. Informed choices are those based on relevant information tha t reflect the decision-maker's values. To date, most research has focused o n the information provided to women deciding whether to undergo tests. This has highlighted the poor quality of information provided to many women. Th ere is agreement on the need to provide information on three key aspects of any test: the condition for which testing is being offered, characteristic s of the test, and the implications of testing. Very little research has be en conducted on decisions after the diagnosis of a fetal abnormality and ho w information and emotional and decisional support are and should be provid ed. Research is now needed in four key areas: first, on the optimal ways of organizing services to facilitate choices that are not only based on relev ant information, but also reflect the decision-maker's values; second, on t he most effective ways of framing information needed for the different deci sions involved in prenatal testing; third, on the most effective media in w hich to deliver information; and, fourth, to identify aspects of counseling that facilitate informed choices following diagnoses of fetal abnormality. If we value women's ability to make informed choices about prenatal tests as highly as we value reliable laboratory tests, evidence-based quality sta ndards need to be developed for the information and support women are given at all stages of the process of prenatal testing. (C) 2001 Wiley-Liss, Inc .