Old Questions, New Paradigms: Ethical, Legal, and Social Complications of Noninvasive Prenatal Testing

Michie, Marsha; Allyse, Megan

doi:10.1080/23294515.2014.993440

Cited by 9 publications

(10 citation statements)

References 36 publications

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“…Addressing concerns about routinization is increasingly important as the scope of NIPT sequencing expands [14] and the degradation of informed decision-making leaves women emotionally unprepared for the results they may receive [15,6]. For example, as testing grows to include non-chromosomal genetic disorders that are less accurately detected through NIPT technology, women may be less likely to understand the results they are receiving, and the necessity for robust informed decision-making will increase.…”

Section: Routinization and Concerns About Informed Decision-makingmentioning

confidence: 99%

“…While theoretical foundations regarding experiential knowledge and perceived societal values have highlighted important influences on prenatal testing decisions [27,28,6], many of these theoretical foundations have not been directly explored among women offered NIPT. Additionally, prior studies investigating perceptions of, and knowledge about, NIPT among women considering its use have not evaluated differences in the frameworks used by women who do or do not uptake NIPT or who display routinized as opposed to significant decision-making [20].…”

Section: Influence Of Experiential Knowledge and Societal Perceptionsmentioning

confidence: 99%

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

Montgomery

Thayer

2020

Preprint

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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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Section: Routinization and Concerns About Informed Decision-makingmentioning

confidence: 99%

Section: Influence Of Experiential Knowledge and Societal Perceptionsmentioning

confidence: 99%

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

Montgomery

Thayer

2020

Preprint

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“…While some scholars welcomed NIPT as a way to mitigate the problem of iatrogenic miscarriages, they also highlighted the tension between a further "routinization" of PT in light of the 'non-invasiveness' of NIPT and the requirements of genetic counselling to enable "informed choices" in practice (Lewis et al 2017;Michie et al 2016;Ravitsky 2017). Many raised the issue of the negative-and indeed potentially discriminatory (Kaposy 2018)-impact of the increasing salience of NIPT for conditions such as Down syndrome on individuals and groups living well with those conditions (Allyse et al 2015;Michie and Allyse 2015;Parham et al 2017). A growing part of this literature has used social science methods, such as surveys, to ground ethical reflections on the opinions and perspectives of women and health care professionals (Lewis et al 2017;Strange 2017;Haidar et al 2016;Ngan et al 2017).…”

Section: Introductionmentioning

confidence: 99%

Imaginaries as infrastructures? The emergence of non-invasive prenatal testing in Austria

Metzler

2019

BioSocieties

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Non-invasive prenatal testing (NIPT) is a new technology used in prenatal testing (PT) that capitalizes on genomic platforms to transform DNA fragments in the blood of pregnant women into information about the genome of a foetus. Since its market introduction in 2011, it has travelled around the globe with remarkable speed. This article engages with the emergence of NIPT in and around Vienna, the capital city of Austria, to explore why and how this technology could travel so quickly in practice. Based on a qualitative analysis of interviews, documents, and field notes, it argues, first, that NIPT could travel so quickly because it travelled as 'adaptable boxes' that added on to different 'local worlds of prenatal testing (PT)', without disrupting them. Second, in so doing, NIPT could travel on a moral and material ground, or an 'imaginary of PT', built in the past. Third, the article argues that elements of this imaginary were also mobilized by commercial pioneers of NIPT, who 'infrastructurized' extant values, practices, and networks among biomedical professionals. Thus, various actors converged in mobilizing moral and material elements of an imaginary, transforming them into an infrastructure that facilitated the travels of NIPT, while also shaping its use.

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“…The introduction of prenatal cell-free DNA screening for chromosome abnormalities has rekindled discussion of ethical and social questions surrounding prenatal testing, perceptions of disability, and abortion (Michie and Allyse 2015). Prenatal cfDNA screening uses cell-free DNA to attain more sensitive screening of common aneuploidies than traditional serum screening (Lo et al 1998).…”

Section: Introductionmentioning

confidence: 99%

“The Top Priority Is a Healthy Baby”: Narratives of Health, Disability, and Abortion in Online Pregnancy Forum Discussions in the US and China

Chandrasekharan

Allyse

2016

Journal of Genetic Counseling

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The introduction of cell-free DNA prenatal genetic screening has rekindled discussion of ethical and social questions surrounding prenatal testing, perceptions of disability, and abortion. The growing use of prenatal genetic screening presents a unique opportunity to assess decision-making around new methods of prenatal testing; especially as there is little available research comparing individual and cultural differences that affect a pregnant woman's decision-making on prenatal testing. We performed a content analysis of online pregnancy forums in the United States and Mainland China. Content from January 2012 to December 2013 was identified through search methodologies and refined to remove duplication. China-based content was translated by a native Mandarin speaker. We used qualitative analysis methods to identify common themes in the dataset. There were 333 English responses and 519 Mandarin responses. Three main themese were identified in the data: decision making factors, attitude towards the pregnancy, and attitudes towards abortion. Women's narratives reflected how broader social forces can have an impact on intimate personal decision-making. Women in the Mandarin dataset evoked stronger narratives of community and/or family decision-making in pregnancy and were more accepting of the possibility of abortion in the event of a finding of fetal abnormality. Narrative in the English dataset more frequently evoked ideas of unconditional love, regardless of fetal diagnosis, but also acknowledged much stronger support services for individuals with disability and less awareness of stigma. These results highlight the necessity of awareness around how broader cultural and social factors can consciously or unconsciously impact women's decisions and highlight potential focus areas for future counseling efforts.

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Old Questions, New Paradigms: Ethical, Legal, and Social Complications of Noninvasive Prenatal Testing

Cited by 9 publications

References 36 publications

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

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

Imaginaries as infrastructures? The emergence of non-invasive prenatal testing in Austria

“The Top Priority Is a Healthy Baby”: Narratives of Health, Disability, and Abortion in Online Pregnancy Forum Discussions in the US and China

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