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The impact of ethical beliefs on decisions about prenatal screening tests: searching for justification
- Authors:
- GARCIA Elisa, TIMMERMANS Danielle R. M., VAN LEEUWEN Evert
- Journal article citation:
- Social Science and Medicine, 66(3), February 2008, pp.753-764.
- Publisher:
- Elsevier
Prenatal screening for Down's syndrome and other chromosomal anomalies has become common obstetrical practice. The purpose of this intervention is to provide women with the information needed to make informed reproductive choices. It is assumed that the ethical beliefs of parents play an important role in decision-making about whether to undergo testing, but little is known about their precise significance. More insight into how women conceptualize their choice of using prenatal screening tests may clarify the impact of personal ethical beliefs. With this aim, we conducted qualitative research consisting of semi-structured interviews with 59 women in the Netherlands who were offered a prenatal screening test. The analysis showed that the ethical views between acceptors and decliners showed similar diversity. In contrast with the currently accepted view, we conclude that ethical beliefs are one of the factors implicated in the decision. Women decide about prenatal testing by balancing the information provided by the test against the risks of further investigation, the emotional burden of a disabled child on their well-being and life perspective, as well as on those of family members. Normative moral principles are introduced once the choice is made, namely as factors in justifying and supporting the decision.
Should we prevent Down's Syndrome? A keynote review
- Author:
- WILLIAMS Paul
- Journal article citation:
- British Journal of Learning Disabilities, 23(2), 1995, pp.46-50.
- Publisher:
- Wiley
Current policy and practice in relation to the prevention of Down's Syndrome is reviewed in the context of the achievements of people with Down's Syndrome. Parent's views are described and some ethical issues discussed. It is suggested that we each need to decide our answer to the question 'Should Down's Syndrome be prevented?', lest practice with which we disagree is adopted by default.
Investigating the lived experience of people with Down syndrome with dementia: overcoming methodological and ethical challenges
- Author:
- WATCHMAN Karen
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 13(2), 2016, p.190–198.
- Publisher:
- Wiley
Adults with Down syndrome are at increased risk of dementia at a significantly younger age and remain under-represented as participants in dementia-related research. Because little is known about their personal experiences either immediately postdiagnosis or as dementia progresses, there is little opportunity that shared individual experiences can shape future policy and practice. To remedy this omission, the author examined methodological and ethical challenges identified as part of a research study that included people with Down syndrome affected by dementia. It has been contended that traditional qualitative approaches are less effective when participants are affected by changing cognitive functioning and reduced verbal communication. To counteract this contention overt participant observation and an adapted narrative research method were used as part of a three-year longitudinal study to help better understand the lived experiences of three adults with Down syndrome affected by dementia. Methodological and ethical challenges were shown to collide, and factors contributing to this effect included identifying process consent, accurate representation of participants, the role of and relationship with the researcher, participants, lack of awareness of their diagnosis of dementia, and need to recognize the importance of social interaction while maintaining academic rigor. Reflections are proffered on two conceptual and practice issues, with a call for both to be recognised and addressed in terms of future policy and practice. First is a lack of awareness of a sense of “self” or identity, resulting in individuals with Down syndrome and dementia being defined by their situation rather than individual preference or need. Second is the lack of information postdiagnosis about dementia being shared with people who have Down syndrome. (Publisher abstract)
Not even in the queue
- Author:
- WELLARD Sarah
- Journal article citation:
- Community Care, 26.8.99, 1999, pp.24-25.
- Publisher:
- Reed Business Information
As donor organs become more scarce, doctors are increasingly selective with the result that those with Down's syndrome are not chosen for surgery.
Dementia: challenges and new directions
- Editor:
- HUNTER Susan
- Publisher:
- Jessica Kingsley
- Publication year:
- 1997
- Pagination:
- 213p.,tables,bibliogs.
- Place of publication:
- London
Explores some of the challenges and new directions in the field of dementia studies. The text is divided into four sections which cover: the context of dementia; specific aspects of dementia including the early onset of dementia, depression, and dementia in people with Down's Syndrome; the user and carer perspective; and the final section looks at service provision including care management, staffing and therapeutic care, therapeutic design and advocacy.