A Study Examining the Views About Reproductive Screening Programmes of Young Women Affected With Congenital Conditions for Which a Screening Programme Is Currently Offered, Compared With Those of Professionals in the Related Fields of Medicine and Disability, and Those of Young Women in the General Population

Gow, Jane (2000) A Study Examining the Views About Reproductive Screening Programmes of Young Women Affected With Congenital Conditions for Which a Screening Programme Is Currently Offered, Compared With Those of Professionals in the Related Fields of Medicine and Disability, and Those of Young Women in the General Population. PhD thesis, University of Glasgow.

Abstract

Reproductive screening programmes may be seen as beneficial, within limits, whether in reducing the incidence of certain serious disorders or in offering information and enhancing choice. However, they have been criticised by disability activists as calling into question the value of disabled people and as resting on 'biomedical' values by which living with an impairment is inevitably problematic. While existing studies have examined the views of a number of professional and lay groups towards screening programmes, little is known of the opinions and perceptions of those affected with the conditions which might be seen as 'preventable' or 'avoidable' by the use of such programmes. The aim of this study was to examine the views of young women with certain congenital conditions for which a screening programme is currently available, compared with those of other groups who have contact with and knowledge of the conditions but who are not themselves affected. The study also aimed to understand affected women's experiences of living with their disorder. Individual interviews were carried out with fourteen women with spina bifida and fourteen women with cystic fibrosis. Five women with Down's syndrome took part in short interviews about their lives. Further interviews were carried out with twenty professionals in the fields of medicine, disability and support groups, and with twenty- nine women in the general population. An inductive approach was taken to analysis, the focus being on respondents' explanations and values. Whereas the concern of professionals was with the general issue of the provision of screening programmes, and women in the general population considered the way that women might take decisions on the basis of their perceptions of consequences and resources, women with spina bifida and cystic fibrosis considered both general and personal questions, and issues of both rights and welfare. These women, broadly supporting the principle of choice, did not suggest that the existence of screening programmes was wrong, but a number felt that others might make decisions in a way that they would not. Their concern was mainly that there was a lack of knowledge about the condition which they had themselves, and that public perceptions of the effects were inadequate. There were differences within groups, especially in relation to personal philosophies of 'activism' or 'acceptance'. There were also differences between the two groups in the way that women described their experiences of living with their disorder and the main causes of difficulties, and also in their views towards screening programmes and the issues seen as most salient. The majority of women with spina bifida suggested that they would see abortion on the grounds of any abnormality as unacceptable, and also felt that spina bifida was a condition for which prevention might not be justified. Women with cystic fibrosis considered whether or not it was right to offer CF population carrier screening, and divergent views were expressed about the importance of preventing this disorder and its relative severity. By describing the perspective and the opinions of women whose views are informed by the experience of living with a congenital disorder, and by indicating similarities with and differences from those of others and within the group, this study can offer an important contribution to the existing empirical work and theoretical literature. It is hoped that dissemination of the findings might encourage fuller information to be offered with reproductive screening programmes, but will also help to continue and to broaden the debate about the complex issues which they raise.

• Item Type: Thesis (PhD)
• Qualification Level: Doctoral
• Additional Information: Adviser: Margaret Reid
• Keywords: Public health, Medical ethics, Disability studies
• Date of Award: 2000
• Depositing User: Enlighten Team
• Unique ID: glathesis:2000-76141
• Copyright: Copyright of this thesis is held by the author.
• Date Deposited: 19 Dec 2019 09:15
• Last Modified: 19 Dec 2019 09:15
• URI: https://theses.gla.ac.uk/id/eprint/76141