What constitutes ‘balanced information in the practitioners’ portrayals of Down's syndrome?

doi:10.1054/midw.2002.0316

Midwifery

Volume 18, Issue 3, September 2002, Pages 230-237

https://doi.org/10.1054/midw.2002.0316 Get rights and content

Abstract

Objective: to explore the information that practitioners perceive they give to pregnant women about the condition of Down's syndrome, and to look at some influences on the construction of this information.

Design: qualitative study incorporating semi-structured interviews with practitioners followed by multidisciplinary discussion groups led by a health-care ethicist.

Setting: inner-city teaching hospital and district general hospital situated in South East England.

Participants: seventy practitioners whose work relates directly or indirectly to perinatal care.

Findings: although women were seen to vary in their knowledge about Down's syndrome, practitioners felt that many did not understand the basic features of the condition. Practitioners themselves rarely had any practical experience or knowledge of people with Down's syndrome. This led to a reliance on ‘medical textbook’ information, which tends to focus primarily on the potential problems of the condition. Due to lack of time, practitioners also relied on the use of information leaflets. However, much more space in these was devoted to explaining the actual screening process rather than the condition, and the very brief descriptions of Down's syndrome lacked any positive statements.

Implications for practice: informed choice in antenatal screening must be based on balanced information about ‘screened for’ conditions. Education about conditions set within a broader context of disability awareness could help to avoid the ‘checklist’ type approach used by many respondents. Practitioners and maternity units as a whole should reflect critically on the origins of the information they are conveying to prospective parents about what it means to live with Down's syndrome. Midwives and others involved in prenatal screening need to be aware of their own feelings about screening and disability. Midwives should also be involved in the planning of any future antenatal screening developments within their workplaces, and it is essential that they prospectively highlight factors such as lack of time and knowledge, which they feel inhibits their ability to facilitate informed choice. Research is needed which explores the consequences of allocating substantial resources into ensuring that women are fully informed about an increasingly complex antenatal screening process.

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The doctors were aware that how they described Down syndrome might affect the decisions made by pregnant women. Many doctors gained their information about Down syndrome from textbooks, yet textbooks are written from a medical model approach focusing on the potential problems (Williams et al., 2002). Differences in culture and ethnicity can impact prenatal screening discussion and decision making.
Down syndrome is a complex genetic disorder resulting in three copies of chromosome 21. Babies with this genetic disorder will have recognisable characteristic facial features that will differ from one baby to another. They will also have some degree of cognitive impairment and learning difficulties. There are many medical conditions associated with Down syndrome, however, due to recent medical advances there have been improvements in their health and longevity. This has led to a rise in people with Down syndrome developing Alzheimer's disease as they age.
The purpose of this review is to provide insight into the impacts that Down syndrome has on foetal development as well as ongoing health issues up to adulthood. There were many ethical issues raised surrounding the Baby Doe case and will also be explored in this review. CINAHL (EBSCO) was the primary medical database for this review retrieving 147 results in relation to Down syndrome and foetal development. An additional search was made retrieving 12 results in relation to ethical issues surrounding prenatal diagnosis of Down syndrome. Further resources such as websites and neonatal nursing textbooks were also used.
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Experience as knowledge: Disability, distillation and (reprogenetic) decision-making
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‘Experiential knowledge’ is increasingly recognised as an important influence on reproductive decision-making. ‘Experiential knowledge of disability’ in particular is a significant resource within prenatal testing/screening contexts, enabling prospective parents to imagine and appraise future lives affected by disability. However, the concept of ‘experiential knowledge’ has been widely critiqued for its idiosyncrasy, its impermanence and consequently its perceived inferiority to (medical) knowledge. This paper explores some of these key critiques of experiential knowledge through an analysis of its constitution and uses in the context of reproductive decision-making. Seventeen UK-resident women with Spinal Muscular Atrophy (SMA), or with SMA in their family, took part in two in-depth interviews: one in 2007–9 and the other in 2013–4. By comparing and contrasting these women's accounts at two time points, this paper demonstrates the stark contrast between ‘lived experience’ of SMA (the visceral everyday realities of life with the condition) and the various way(s) this experience was transformed into, and presented as, ‘knowledge’ through the processes of making, and accounting, for reproductive decisions. The analysis highlights that multiple, distinct and sometimes competing experiential frameworks are used to conceptualise SMA across time and context. However, rather than evidence of its fallibility, this finding highlights that ‘knowledge’ is an inappropriate vessel with which to capture and transfer ‘experiential knowledge’. Rather, we need to consider how to value such insight in ways that harnesses its inherent strength without leaving it vulnerable to the epistemological critiques attracted by labelling it ‘knowledge’.
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The expressivist objection to prenatal testing is acknowledged as a significant critique of prenatal testing practices most commonly advanced by disability rights supporters. Such writers argue that prenatal testing and selective termination practices are objectionable as they express disvalue not only of the foetus being tested, but also of disabled people as a whole, by focusing exclusively on the disabling trait. While the objection has been widely critiqued on the basis of its theoretical incoherence, this paper highlights the way in which it, nevertheless, is a significant mediator in decisions around the use of reproductive genetic technologies. By drawing on 41 in-depth qualitative interviews (drawn from a sample of 61) conducted in the UK between 2007 and 2009 with families and individuals living with a genetic disease, Spinal Muscular Atrophy (SMA), this paper highlights the ways in which expressivist objections feature prominently in the reproductive decisions of families living with SMA and the significant emotional burden they represent. While the literature on the expressivist objection has focused on the reproductive decisions of those undergoing prenatal testing for a condition of which they have little (or no) prior knowledge, the context of intimate familial relationships and extensive experience with the tested-for condition fundamentally alters the nature and impact of expressivist objections within families living with an inheritable condition. By focussing on the reproductive decisions of families living with SMA and their strategic management of the expressivist objection, this paper will address the call, made primarily by disability rights supporters, for ‘experientially based’ (as opposed to medical) information about the tested-for disability to be made available to would-be parents considering selective termination. It will be argued that parents' experiential knowledge of the tested-for disability can, in fact, amplify expressivist objections to prenatal testing, and thus paradoxically constrain, rather than facilitate, reproductive decisions.
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^f1: (Correspondence to: CW E-mail: [email protected])

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Regular ArticleWhat constitutes ‘balanced information in the practitioners’ portrayals of Down's syndrome?

Abstract

Social Science and Medicine

Midwifery

Social Science and Medicine

Social Science and Medicine

Lancet

Social Science and Medicine

Social Science and Medicine

What parents are told after prenatal diagnosis of a sex chromosome abnormality: interview and questionnaire study

British Medical Journal

Enabling education: experiences in special and ordinary schools

Examining ethics in practice: health service professionals' evaluations of in-hospital ethics seminars

Nursing Ethics

Attitudes towards termination for fetal abnormality: comparisons in three European countries

Clinical Genetics

More training is needed in health care of people with learning disabilities (letter)

British Medical Journal

From a different planet: women who choose to continue their pregnancy after a diagnosis of Down's syndrome

The Practising Midwife

Eugenics and the new genetics in Britain: examining contemporary professionals' accounts

Public Understanding of Science

Regular Article
What constitutes ‘balanced information in the practitioners’ portrayals of Down's syndrome?