The Influence of Experiential Knowledge and Societal Perceptions on Decision-Making Regarding Non-Invasive Prenatal Testing (NIPT)

Abstract

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 yielded concerns among bioethicists regarding the quality and process of informed consent, as the routinization of this technology could degrade the intentionality of women choosing whether to undergo testing. Prior studies evaluating the NIPT decision-making process 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 both embodied and empathetic experiential knowledge, shape perceptions of risk and the societal use of NIPT. In order to address this issue, qualitative, semi-structured interviews with 25 women who had been offered NIPT were performed. Women were categorized by NIPT use/non-use, as well as whether their described decision-making process was routinized. Qualitative analysis of the data using a phenomenological 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. 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. Qualitative analysis revealed that perceptions of widespread use of NIPT, pervasive societal narratives of NIPT use as progressive and “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 in-person and online to consider how they might use the information provided by NIPT. The findings of this study reveal the societal narratives and perceptions that shape differential decision-making regarding NIPT. 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.

Experiences of non‐invasive prenatal screening: A survey study

“…Therefore, it is not surprising that our sample of women had moderate-high incomes, which has also been reported in other studies. 9,10 Despite this, our findings may not accurately reflect all women who elect to undergo NIPT.…”

“…As such, it is essential to prioritise counselling and the provision of accurate and objective information regardless of their perceived current knowledge. It will also be important to take current societal perceptions and narratives into account as those have a substantial impact on women’s decision processes 10 . A recent scoping review has also demonstrated the importance of providing information to women, and couples, using different types of modalities to improve understanding and knowledge, such as counselling, booklets, and interactive eHealth tools including decision‐making aids 28 …”

“…This lack of informed decision-making is echoed by several international studies, where women have reported to perceive NIPT as routine or necessity in pregnancy care. [10][11][12] It is recommended that pre-test counselling regarding NIPT informs patients that testing is elective and is comprised of objective information (eg accuracy of the test, incidental findings). 3,7,[13][14][15] Indeed, a recent Australian study of women highlighted the strongly held value of being provided with complete information about the pros and cons of NIPT.…”

“…However, pre‐ and post‐test counselling were identified as areas for improvement, with 31% of the sample indicating they were not informed of the consequences of a high‐risk result. This lack of informed decision‐making is echoed by several international studies, where women have reported to perceive NIPT as routine or necessity in pregnancy care 10–12 . It is recommended that pre‐test counselling regarding NIPT informs patients that testing is elective and is comprised of objective information (eg accuracy of the test, incidental findings) 3,7,13–15 .…”

Would I have Wanted to Know? A Qualitative Exploration of Women’s Attitudes, Beliefs and Concerns about Non-Invasive Prenatal Testing for de novo Genetic Conditions after having a Child with a de novo Genetic Disorder

“…In the context of a hypothetical non-invasive test for hundreds of different genetic disorders, this divide over whether participants would or would not have wanted to know certain information should be addressed during an informed consent process, with the aim of promoting personal choice based on evidence [10]. Parental decision making around the use of NIPT is not a static process and involves not only their own experiential knowledge, but also the availability and use of knowledge from their perceptions of the societal use of NIPT, the expected emotional impact of genetic information and perceptions of the utility of genetic information [20]. These decision making processes tend to be separate from information provided by clinicians and are typically related to societal influences and views, the latter often not well defined for rare genetic conditions.…”