An offer you can't refuse? Ethical implications of non-invasive prenatal diagnosis

Schmitz, Dagmar; Netzer, Christian; Henn, Wolfram

doi:10.1038/nrg2631

Cited by 55 publications

(41 citation statements)

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“…We draw on this literature to consider how the novel features of NIPD raise new and complex social and ethical issues (Newson 2008;Ravitsky 2009;Schmitz, Netzer et al 2009) and how the public might respond to them.…”

Section: Public Attitudes Towards Prenatal Testing and Nipdmentioning

confidence: 99%

Public viewpoints on new non-invasive prenatal genetic tests

Farrimond

Kelly

2011

Public Underst Sci

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Prenatal screening programmes have been critiqued for their routine implementation according to clinical rationale without public debate. A new approach, non-invasive prenatal diagnosis (NIPD), promises diagnosis of fetal genetic disorders from a sample of maternal blood without the miscarriage risk of current invasive prenatal tests (e.g. amniocentesis). Little research has investigated the attitudes of wider publics to NIPD. This study used Q-methodology, which combines factor analysis with qualitative comments, to identify four distinct 'viewpoints' amongst 71 UK men and women: 1. NIPD as a new tool in the ongoing societal discrimination against the disabled; 2. NIPD as a positive clinical application offering peace of mind in pregnancy; 3. NIPD as a medical option justified for severe disorders only; and 4. NIPD as a valid expansion of personal choice. Concerns included the 'trivialization of testing' and the implications of commercial/direct-to-consumer tests. Q-methodology has considerable potential to identify viewpoints and frame public debate about new technologies.Running head: Public viewpoints on new non-invasive prenatal genetic tests 3 'Non-invasive prenatal diagnosis (or NIPD) is the term for a new approach to genetic prenatal diagnosis. NIPD technologies are at various stages of development, but as a collective, aim to offer earlier, easier and less risky genetic testing of the fetus through maternal blood with the potential to replace current diagnostic pathways (e.g. for Down's syndrome diagnosis) and widen prenatal testing possibilities (Hahn & Chitty, 2008). NIPD technologies have raised considerable debate within bioethical and social scientific communities, but with little attention within public 1 spheres to date. This paper reports findings from an ESRC funded study of public attitudes towards NIPD. It was conducted in the UK, where prenatal testing is a well-established aspect of obstetric care, and the small amount of media reporting of early NIPD trials has been largely positive. Non-invasive prenatal diagnosisCurrent screening pathways for common genetic disorders move progressively from noninvasive towards invasive techniques. Non-invasive technologies such as ultrasound are used initially to screen pregnancies. Those identified as 'high risk' are subsequently offered diagnosis through invasive techniques such as amniocentesis or chorionic villus sampling (CVS). These carry a small but significant miscarriage risk (Caughey, Hopkins et al. 2006) and are usually conducted from 15 weeks onwards. One goal of NIPD is to replace this two-step pathway with a one-step early less risky diagnostic test by taking blood from the pregnant woman to analyse the genetic information of the fetus. Non-invasive techniques have been driven by the discovery of 'cell-free fetal DNA' (cffDNA) and RNA (cffRNA) in maternal plasma during pregnancy (Lo, Corbetta et al. 1997). This allows the possibility of obtaining definitive genetic information about the fetus for a limited range of conditions (e.g. ...

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Section: Public Attitudes Towards Prenatal Testing and Nipdmentioning

confidence: 99%

Public viewpoints on new non-invasive prenatal genetic tests

Farrimond

Kelly

2011

Public Underst Sci

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“…For the UK, data from the National Down Syndrome Cytogenetic Register shows that the proportion of cases of Down’s syndrome that are diagnosed prenatally has increased from approximately 30% in 1989 to 60% in 2006 [45,54,55]; currently, around 40% of Down’s syndrome cases are diagnosed after birth. Termination rates have remained approximately constant during this period and around 90% of those prenatally diagnosed Down’s syndrome pregnancies (whose outcomes were known) were terminated in the UK in 2005 [54,56]; other studies have also reported termination rates of around 90% [57].…”

Section: Ethical Legal and Social Implicationsmentioning

confidence: 99%

“…Various measures have been proposed [41] which require more extensive evaluation across a variety of settings, particularly since one effect of providing additional information to participants and ensuring an informed choice may be to reduce uptake of screening [42]. Although participation in the screening tests for Down’s syndrome may not achieve the now commonly stated aim of informed choice for a significant number of women [43,44,45], a subsequent invasive diagnosis currently provides another opportunity for reflection in the context of providing consent for that procedure. By potentially replacing the existing multi-step Down’s syndrome screening process with a single early highly predictive blood test, the use of cffDNA technology may reduce opportunities for exercising informed choice.…”

Section: Ethical Legal and Social Implicationsmentioning

confidence: 99%

Non-Invasive Prenatal Diagnosis Using Cell-Free Fetal DNA Technology: Applications and Implications

Hall

Bostanci²,

Wright

2010

Public Health Genomics

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Cell-free fetal DNA and RNA circulating in maternal blood can be used for the early non-invasive prenatal diagnosis (NIPD) of an increasing number of genetic conditions, both for pregnancy management and to aid reproductive decision-making. Here we present a brief review of the scientific and clinical status of the technology, and an overview of key ethical, legal and social issues raised by the analysis of cell-free fetal DNA for NIPD. We suggest that the less invasive nature of the technology brings some distinctive issues into focus, such as the possibility of broader uptake of prenatal diagnosis and access to the technology directly by the consumer via the internet, which have not been emphasised in previous work in this area. We also revisit significant issues that are familiar from previous debates about prenatal testing. Since the technology seems to transect existing distinctions between screening and diagnostic tests, there are important implications for the form and process involved in obtaining informed consent or choice. This analysis forms part of the work undertaken by a multidisciplinary group of experts which made recommendations about the implementation of this technology within the UK National Health Service.

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“…Meanwhile, notions of community, common good, public interest, responsibility, and duties to others are given little attention [6]; and recent bioethics literature on prenatal testing and reproductive autonomy is no exception. While numerous authors have explored the ethical aspects of the newest prenatal testing technology (cellfree fetal DNA testing), emphasis seems to be most often placed on those ethical dimensions that pertain to the individual, such as the need for thorough counselling about risks and benefits, informed consent, social or medical pressure on individuals to test, as well as equity in access and regulation issues pertaining to direct-to-consumer use [1,[7][8][9][10][11][12]. Except from proponents of the disability rights critique, social concerns such as the above-mentioned ones have seemingly been given less attention.…”

Section: Conceptual Background and Relevance Of Moral Responsibility mentioning

confidence: 99%

Moral Responsibility in the Context of Prenatal Testing: What can be Expected?

Lemoine

2016

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Droits d'auteur © M-E Lemoine, 2015Ce document est protégé par la loi sur le droit d'auteur. L'utilisation des services d'Érudit (y compris la reproduction) est assujettie à sa politique d'utilisation que vous pouvez consulter en ligne. Résumé de l'article Des auteurs ont suggérés que l'examen des aspects éthiques et sociaux du test prénatal pouvait être vu comme une responsabilité individuelle des patients, cependant aucun fondement conceptuel n'a été proposé pour appuyer cette thèse. J'avance que la vision de "responsabilité morale comme une vertu" de Candace Cummins Gauthier, développée comme une volonté de concilier les notions d'autonomie et de communauté, fournit ce cadre conceptuel. M-E Lemoine Résumé SummaryDes auteurs ont suggérés que l'examen des aspects éthiques et sociaux du test prénatal pouvait être vu comme une responsabilité individuelle des patients, cependant aucun fondement conceptuel n'a été proposé pour appuyer cette thèse. J'avance que la vision de "responsabilité morale comme une vertu" de Candace Cummins Gauthier, développée comme une volonté de concilier les notions d'autonomie et de communauté, fournit ce cadre conceptuel.

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An offer you can't refuse? Ethical implications of non-invasive prenatal diagnosis

Cited by 55 publications

References 4 publications

Public viewpoints on new non-invasive prenatal genetic tests

Public viewpoints on new non-invasive prenatal genetic tests

Non-Invasive Prenatal Diagnosis Using Cell-Free Fetal DNA Technology: Applications and Implications

Moral Responsibility in the Context of Prenatal Testing: What can be Expected?

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