The influence of experiential knowledge and societal perceptions on decision-making regarding non-invasive prenatal testing (NIPT)

Abstract

Background Non-invasive prenatal testing (NIPT) allows women to access genetic information about their fetuses without the physical risk inherent to prior testing methods. The advent of NIPT technology has led to concerns regarding the quality and process of informed consent, as a view of NIPT as “routine” could impair women’s considered approach when choosing to undergo testing. Prior studies evaluating NIPT decision-making have focused on the clinical encounter as the primary environment for acquisition of biomedical information and decision formation. While important, this conceptualization fails to consider how additional sources of knowledge, including embodied and empathetic experiential knowledge, shape perceptions of risk and the societal use of NIPT. Methods In order to address this issue, qualitative, semi-structured interviews with 25 women who had been offered NIPT were performed. Participants came from a well-resourced, rural setting near a major academic medical center in the US. Women were categorized by NIPT use/non-use as well as whether their described decision-making process was perceived as making a significant decision requiring contemplation (“significant”) versus a rapid or immediate decision (“routinized”). A constructivist general inductive approach was used to explore themes in the data, develop a framework of NIPT decision-making, and compare the perceptions of women with differential decision-making processes and outcomes. Results A framework for decision-making regarding NIPT was developed based on three emergent factors: perceptions of the societal use of NIPT, expected emotional impact of genetic information, and perceived utility of genetic information. Analysis revealed that perceptions of widespread use of NIPT, pervasive societal narratives of NIPT use as “forward-thinking,” and a perception of information as anxiety-relieving contributed to routinized uptake of NIPT. In contrast, women who displayed a lack of routinization expressed fewer stereotypes regarding the audience for NIPT and relied on communication with their social networks to consider how they might use the information provided by NIPT. Conclusions The findings of this study reveal the societal narratives and perceptions that shape differential decision-making regarding NIPT in the U.S. context. Understanding and addressing these perceptions that influence NIPT decision-making, especially routinized uptake of NIPT, is important as the use and scope of this technology increases.

Demographic Characteristics Associated With Perceptions of Personal Utility in Genetic and Genomic Testing

“…We then combined these 46 newly identified studies with the 31 studies included in the review by Kohler et al 1 Finally, due to the aforementioned challenges in data synthesis, we removed 25 studies conducted internationally, for a final sample of 52 studies ( Figure ). 4 , 5 , 6 , 7 , 8 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 , 65 , 66 …”

False-positives and false-negatives in non-invasive prenatal testing (NIPT): what can we learn from a meta-analyses on > 750,000 tests?

“…Besides this major trust of many MDs in NIPT results, the public and pregnant women are not well informed about the possibilities NIPT really comprises. This is only rarely systematically studied, but at least an influence of social class and education level on NIPT perception was shown in an US-study [ 29 ]. Another study done in Saudi Arabia showed that "the acceptance rate for NIPT is high, despite incomplete understanding of the benefits and limitations of the test" [ 30 ]; and similar results were obtained for pregnant women from China [ 31 ].…”

Second-tier non-invasive prenatal screening for Down syndrome in a public obstetric unit: the first 12 months

“…In North America during the early years of NIPT, NIPT was chosen by 43% of women who had a positive DS screening, 43% of women who had an ultrasonographic marker, and 36% of women who had an ultrasonographic abnormality 26 . NIPT is more likely to be chosen when women perceive NIPT is widespread and routine, forward-thinking, and anxiety-relieving 27 . Our findings showed that NIPT was more likely to be chosen by women with more advanced education, which was consistent with previous local studies.…”