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.
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.
The value of primary preventative therapies for cardiovascular disease (CVD) in older adults (age ≥75 years) is less certain than in younger patients. There is a lack of quality evidence in older adults due to underenrolment in pivotal trials. While aspirin is no longer recommended for routine use in primary prevention of CVD in older adults, statins may be efficacious. However, it is unclear which patient subgroups may benefit most, and guidelines differ between expert panels. Three relevant geriatric conditions (cognitive impairment, functional impairment and polypharmacy) may influence therapeutic decision making; for example, baseline frailty may affect statin efficacy, and some have advocated for deprescription in this scenario. Evidence regarding statins and incident functional decline are mixed, and vigilance for adverse effects is important, especially in the setting of polypharmacy. However, aspirin has not been shown to affect incident cognitive or functional decline, and its lack of efficacy extends to patients with baseline cognitive impairment or frailty. Ultimately, the utility of primary preventative therapies for CVD in older adults depends on potential lifetime benefit. Rather than basing treatment decisions on absolute risk alone, consideration of comorbidities, polypharmacy and life expectancy should play a significant role in decision making. Coronary calcium score and new tools for risk stratification validated in older adults that account for the competing risk of death may aid in evaluating potential benefits. Given the complexity of therapeutic decisions in this context, shared decision making provides an important framework.
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.
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