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Abstract: Despite the aim of nuchal translucency screening to enhance reproductive choices among prospective parents, research on the experience of those who choose to decline this screening has been fairly limited. The objective of this study is to gain an understanding of how parents who decline screening account for their decision in a setting where screening for Down''s syndrome in early pregnancy is the norm. The majority of research on prenatal screening choices has been conducted retrospectively; there has been very little research that has explored decision making on a prospective basis and that has included both parents. In order to study this question, a purposive sample of ten couples who had decided to decline screening was recruited from four health care centres in Iceland. Data were gathered in semi-structured interviews conducted with each participant twice during the pregnancy (at 7–12 weeks pregnant and at 12–24 weeks pregnant), for a total of 40 interviews. We find that the decision to decline screening is largely determined by what prospective parents bring with them to the pregnancy, i.e., their personal philosophy of Down''s syndrome and the high value they place on maintaining the complexity of life. The test is also considered unreliable by some of the participants. These findings have implications for those who are involved in formulating and providing antenatal screening policies and practices. [Copyright &y& Elsevier]

Prenatal screening occupies a prominent role within sociological debates on medical uncertainty. A particular issue concerns the limitations of routine screening which tends to be based on risk prediction. Computer assisted visual technologies such as Magnetic Resonance Imaging (MRI) are now starting to be applied to the prenatal realm to assist in the diagnosis of a range of fetal and maternal disorders (from problems with the fetal brain to the placenta). MRI is often perceived in popular and medical discourse as a technology of certainty and truth. However, little is known about the use of MRI as a tool to confirm or refute the diagnosis of a range of disorders in pregnancy. Drawing on qualitative research with pregnant women attending a fetal medicine clinic in the North of England this paper examines the potential role that MRI can play in mediating pregnancy uncertainty. The paper will argue that MRI can create and manage women's feelings of uncertainty during pregnancy. However, while MRI may not always provide women with unequivocal answers, the detailed information provided by MR images combined with the interpretation and communication skills of the radiologist in many ways enables women to navigate the issue. Our analysis of empirical data therefore highlights the value of this novel technological application for women and their partners. It also seeks to stress the merit of taking a productive approach to the study of diagnostic uncertainty, an approach which recognises the concepts dual nature. [ABSTRACT FROM AUTHOR]

Diagnosis can be both a ‘diagnostic moment’, but also a process over time. This paper uses secondary analysis of narrative interviews on ovarian cancer, antenatal screening and motor neurone disease to explore how people relate assembling procedural, spatial and interactional evidence before the formal diagnostic moment. We offer the idea of a diagnostic assemblage to capture the ways in which individuals connect to and re-order signs and events that come to be associated with their bodies. Building on the empirical work of Poole and Lyne (2000) in the field of breast cancer diagnosis, we identify how patients describe being alerted to their diagnosis, either through ‘clues’ they report picking up (often inadvertently) or through ‘cues’, perceived as a more intentional prompt given by a health professional, or an organisational process. For patients, these clues frequently represent a breach in the expected order of their encounter with healthcare. Even seemingly mundane episodes or behaviours take on meanings which health professionals may not themselves anticipate. Our findings speak to an emergent body of work demonstrating that experiences of formal healthcare during the lead-up to diagnosis shape patients' expectations, degree of trust in professionals, and even health outcomes. [ABSTRACT FROM AUTHOR]

Abstract: There has been a striking growth in the availability of health-related information based on personal experience in recent years and internet users are often drawn towards other people’s stories about their health. Accounts of other people’s experiences might convey social and emotional information that is not otherwise available but little is known about how it is used or the implications of its use in practice. This paper examines how people refer to information about other people’s experiences when accounting for decisions about antenatal diagnostic testing for foetal abnormality. We conducted a secondary analysis of 37 qualitative interviews undertaken across the UK with 36 women and nine of their male partners (eight couples were interviewed together) who talked about diagnostic testing for foetal abnormality in 55 pregnancies. When describing their decisions, respondents referred to examples of knowledge gleaned from their own and other individuals’ experiences as well as information based on biomedical or clinical-epidemiological research (usually about the probabilities of having a child affected by health problems or the probability of diagnostic tests causing miscarriage). Both forms of knowledge were employed in people’s accounts to illustrate the legitimacy and internal coherence of decisions taken. The analysis demonstrates the personally idiosyncratic ways that people reflect on and incorporate different types of information to add meaning to abstract ideas about risk, to imagine the consequences for their own lives and to help them to make sense of the decisions they faced. [Copyright &y& Elsevier]

Abstract: Exponential growth in genomics has led to public and private initiatives worldwide that have dramatically increased the number of procreative couples who are aware of their ability to transmit genetic disorders to their future children. Understanding how couples process the meaning of being genetically at-risk for their procreative life lags far behind the advances in genomic and reproductive sciences. Moreover, society, policy makers, and clinicians are not aware of the experiences and nuances involved when modern couples are faced with using Preimplantation Genetic Diagnosis (PGD). The purpose of this study was to discover the decision-making process of genetically at-risk couples as they decide whether to use PGD to prevent the transmission of known single-gene or sex-linked genetic disorders to their children. A qualitative, grounded theory design guided the study in which 22 couples (44 individual partners) from the USA, who were actively considering PGD, participated. Couples were recruited from June 2009 to May 2010 from the Internet and from a large PGD center and a patient newsletter. In-depth semi-structured interviews were completed with each individual partner within the couple dyad, separate from their respective partner. We discovered that couples move through four phases (Identify, Contemplate, Resolve, Engage) of a complex, dynamic, and iterative decision-making process where multiple, sequential decisions are made. In the Identify phase, couples acknowledge the meaning of their at-risk status. Parenthood and reproductive options are explored in the Contemplate phase, where 41% of couples remained for up to 36 months before moving into the Resolve phase. In Resolve, one of three decisions about PGD use is reached, including: Accepting, Declining, or Oscillating. Actualizing decisions occur in the Engage phase. Awareness of the decision-making process among genetically at-risk couples provides foundational work for understanding critical processes and aids in identifying important gaps for intervention and future research. [Copyright &y& Elsevier]

Abstract: The diffusion of antenatal screening programmes for Down syndrome has triggered much discussion about their powerful potential to enhance pregnant women''s autonomy and reproductive choices. Simultaneously, considerable debate has been engendered by concerns that such programmes may directly contribute to the emergence of new and complex ethical, legal and social dilemmas for women. Given such discussion and debate, an examination of women''s decision-making within the context of antenatal screening for Down syndrome is timely. This paper aims to undertake a meta-synthesis of qualitative studies examining the factors influencing pregnant women''s decisions to accept or decline antenatal screening for Down syndrome. The meta-synthesis aims to create more comprehensive understandings and to develop theory which might enable midwives and other healthcare professionals to better meet the needs of pregnant women as they make their screening decisions. Ten electronic health and social science databases were searched together with a hand-search of eleven journals for papers published in English between 1999 and 2008, using predefined search terms, inclusion and exclusion criteria, and a quality appraisal framework. Nine papers met the criteria for this meta-synthesis, providing an international perspective on pregnant women''s decision-making. Twelve themes were identified by consensus and combined into five core concepts. These core concepts were: destination unknown; to choose or not to choose; risk is rarely pure and never simple; treading on dreams, and betwixt and between. A conceptual framework is proposed which incorporates these themes and core concepts, and provides a new insight into pregnant women''s complex decision-making processes with regard to antenatal screening for Down syndrome. However, further research is necessary to determine whether or not the development of a model of decision-making may empower pregnant women in making choices about screening. [Copyright &y& Elsevier]

Enthusiasm for so-called 'personalized' or 'precision' medicine has encouraged the growth of the molecular diagnostics industry and the proliferation of high-priced proprietary tests that can predict, diagnose or inform the treatment of diverse clinical conditions. Through a case study of non-invasive prenatal testing (NIPT), we explore how the mechanisms governing the development and dissemination of this novel prenatal screening test are most aptly understood as a 'regulatory regime.' We describe how private actors tied to the manufacturers of this test form a network of "experts" that contribute to the coordination of this regime by virtue of their efforts to navigate the governance of test adoption and also form spaces in which the standards governing test adoption are developed. We draw attention to private actors in this regime to demonstrate that they are a constitutive element of the public policy system governing biomedical innovation and adoption. Through this case study of NIPT we deepen our previous analysis of the role of consultants in navigating and shaping a regulatory regime (Holloway and Miller, 2020) and offer new insight about how scientists work with consultants to shape a regulatory regime that serves industry interests. Our work indicates that the private actors tied to the manufacturers of NIPT (experts employed by industry to court scientists and lobby payers, scientists collaborating with industry, key opinion leaders involved with clinical practice guidelines, lobbyists and consultants), constitute an 'invisible college' that navigates the governance of test adoption. The formations and negotiations over standards for NIPT identified in this paper comprise a new institutional norm: a polycentric regulatory regime permeated by commercial interests. The institutionalization of this regime has implications for accountability, transparency and test quality amidst a proliferation of new proprietary molecular tests.' • A case study of mechanisms governing the dissemination of NIPT in the US. • Private actors tied to the manufacturers of NIPT constitute an invisible college. • These actors engage in various levels of knowledge production. • The invisible college navigates test adoption in a regulatory regime.. • This regime has implications for accountability, transparency and test quality. [ABSTRACT FROM AUTHOR]