546 research outputs found
Recognition and property in Hegel and the early Marx
The article attempts to show, first, that for Hegel the role of property is to enable persons both to objectify their freedom and to properly express their recognition of each other as free, and second, that the Marx of 1844 uses fundamentally similar ideas in his exposition of communist society. For him the role of ‘true property’ is to enable individuals both to objectify their essential human powers and their individuality, and to express their recognition of each other as fellow human beings with needs, or their ‘human recognition’. Marx further uses these ideas to condemn the society of private property and market exchange as characterised by ‘estranged’ forms of property and recognition. He therefore uses a structure of ideas which Hegel had used to justify the institutions of private property and market exchange in order to condemn those same institutions. It is concluded that Marx’s adoption from Hegel of the idea that property as the means of self-objectification and of expressed recognition, leaves his vision of communism open to the charge that in it, just as in market society, the relations between human beings are mediated by things
The development of children's political competence in a primary school: A quest
This research explores how children recount and account for their developing political competence at primary school. To access participants’ experience and perceptions of political participation and agency and the structures and practices within which they operate, I designed a post-structurally informed ethnographic study for a large junior school in the South West of England. The result was a range of qualitative and participative data gathering methods which emphasised the importance and value of children’s voices and testimony: interviews, observations, diaries, analytical discussions and ethnographic field notes. The resulting data comprise a collection of participant accounts and interpretations of living and learning in school. In contrast to my research approach, my findings identify a construction of the child as deficient, incompetent and untrustworthy, destabilising children’s emergent confidence as political beings and severely limiting the effectiveness of educational initiatives to engage them in active political participation. As a result, forms of political participation and self-expression are muted: children are encouraged to develop a conservative, self-preserving form of agency hidden from view and often characterised by self-doubt and self-suppression, counter to curricular expectations of political participation in school and community life. However, using Foucauldian theoretical tools, I argue that some children’s responses to the pressure of the school’s normalising structures and practices creatively build an effective, but subaltern, political competence, allowing children to exercise agency in strategic conformity and resistance. Being unrecognised, though, outside the surveillance of the curriculum and its enforcers, this learning is not readily available for teachers and the school to engage with and nurture. This presents both a missed opportunity for primary education and a threat to the stability and sustainability of children’s credible political agency. Empowering children requires seeing them as politically capable and competent, rather than lesser adults, deficient and lacking in citizenship competence
A qualitative study looking at informed choice in the context of non-invasive prenatal testing for aneuploidy
OBJECTIVE: To explore women's attitudes towards non-invasive prenatal testing (NIPT) and determine factors influencing their decisions around uptake of NIPT. METHOD: We conducted qualitative interviews to assess knowledge, attitude and deliberation amongst women offered NIPT in a public health service. In total, 45 women took part in telephone interviews (79% participation rate). RESULTS: Most women could recount the key aspects of NIPT discussed during pre-test counselling but had variable knowledge about Down syndrome. Analysis of women's attitudes towards undergoing NIPT revealed three dominant factors they considered when reflecting on the test: (1) how NIPT compared with alternative testing options, (2) reflections on coping and (3) moral or religious values. Exploring the deliberative process revealed the different paths women take when making decisions. For some, it was an extension of the decision to have Down syndrome screening; some considered it early on following the booking-in appointment; others made step-wise decisions about NIPT when it became relevant to them. CONCLUSION: Our findings support the importance of personalised counselling, whereby women and their partners have the opportunity to reflect on the implications of the test results in the context of their own lives and values. Our data highlight the influence of personal circumstances on decision-making
Stakeholder attitudes and needs regarding cell-free fetal DNA testing
PURPOSE OF REVIEW: To explore stakeholder views on cell-free DNA testing and highlight findings important for successful implementation and the provision of best practice in counseling.
RECENT FINDINGS: Noninvasive tests based on the analysis of cell-free fetal DNA are now widely available in clinical practice and applications are expanding rapidly. It is essential that stakeholder views are considered in order to identify and address any ethical and social issues. We provide an overview of stakeholder viewpoints and then focus on the key issues of informed decision making, test uptake, service delivery and information sources.
SUMMARY: Stakeholders are positive about the introduction of cell-free fetal DNA testing into clinical practice. They describe both practical and psychological benefits arising from tests that are safe and can potentially be performed earlier in pregnancy. Key concerns, which include the potential for these tests to have a negative impact on informed decision making and increased societal pressure to have testing, can be addressed through careful parent-directed counseling. As applications for these tests expand it is increasingly important to develop innovative approaches to facilitate good understanding for parents who are offered noninvasive prenatal testing
Development and validation of a measure of informed choice for women undergoing non-invasive prenatal testing for aneuploidy.
Non-invasive prenatal testing (NIPT) using cell-free DNA for aneuploidy is a highly accurate screening test; however, concerns exist around the potential for routinisation of testing. The multidimensional measure of informed choice (MMIC) is a quantitative instrument developed to assess informed choice for Down syndrome screening (DSS). We have validated a modified MMIC for NIPT and measured informed choice among women offered NIPT in a public health service. The measure was distributed to women recruited across eight maternity units in the United Kingdom who had accepted DSS. Construct validity was assessed by simultaneously conducting qualitative interviews. Five hundred and eighty-five questionnaires were completed and 45 interviews conducted after blood-draw (or equivalent for those that declined NIPT). The measure demonstrated good internal consistency and internal validity. Results indicate the vast majority of women (89%) made an informed choice; 95% were judged to have good knowledge, 88% had a positive attitude and 92% had deliberated. Of the 11% judged to have made an uninformed choice, 55% had not deliberated, 41% had insufficient knowledge, and 19% had a negative attitude. Ethnicity (OR=2.78, P=0.003) and accepting NIPT (OR=16.05, P=0.021) were found to be significant predictors of informed choice. The high rate of informed choice is likely to reflect the importance placed on the provision of pre-test counselling in this study. It will be vital to ensure that this is maintained once NIPT is offered in routine clinical practice
Non-invasive prenatal testing for aneuploidy: a systematic review of Internet advertising to potential users by commercial companies and private health providers.
BACKGROUND: The development of non-invasive prenatal testing has increased accessibility of fetal testing. Companies are now advertising prenatal testing for aneuploidy via the Internet. OBJECTIVES: The aim of this systematic review of websites advertising non-invasive prenatal testing for aneuploidy was to explore the nature of the information being provided to potential users. METHODS: We systematically searched two Internet search engines for relevant websites using the following terms: 'prenatal test', 'antenatal test', 'non-invasive test', 'noninvasive test', 'cell-free fetal DNA', 'cffDNA', 'Down syndrome test' or 'trisomy test'. We examined the first 200 websites identified through each search. Relevant web-based text was examined, and key topics were identified, tabulated and counted. To analyse the text further, we used thematic analysis. MAIN RESULTS: Forty websites were identified. Whilst a number of sites provided balanced, accurate information, in the majority supporting evidence was not provided to underpin the information and there was inadequate information on the need for an invasive test to definitely diagnose aneuploidy. CONCLUSIONS: The information provided on many websites does not comply with professional recommendations. Guidelines are needed to ensure that companies offering prenatal testing via the Internet provide accurate and comprehensible information
Exploring the impact of Osteogenesis Imperfecta on families: A mixed-methods systematic review
Background: Osteogenesis Imperfecta (OI) is a rare genetic condition whose key characteristic is increased bone fragility. OI has the potential to impact upon all family members, making it important to consider the challenges families face, how they cope and their support needs as the affected individual moves from childhood through to adult life. /
Objective: To conduct a mixed-methods systematic review investigating the experiences of families when a family member is affected with OI. /
Methods: A systematic search of seven electronic databases, relevant patient organisation websites and reference lists was conducted. Data extraction was performed for all studies that met the eligibility and quality criteria. Results were synthesised following the principles of thematic analysis. /
Results: One mixed-method, six qualitative and six quantitative studies were included in the review. Three overarching themes were identified through thematic analysis: Impact of OI on the psychosocial wellbeing of families, impact on family life and evolving roles and relationships. Fear of fractures and the uncertainty of when the next fracture will occur are key issues that permeate all areas of family life and impact upon all family members. /
Conclusion: The experiences, coping strategies and support needs of families affected by OI were highly variable and changed over time. Future research should address the need for adaptive health and education interventions that support all family members
Health professionals’ and coroners’ views on less invasive perinatal and paediatric autopsy: a qualitative study
OBJECTIVE: To assess health professionals’ and coroners’ attitudes towards non-minimally and minimally invasive autopsy in the perinatal and paediatric setting. METHODS: A qualitative study using semistructured interviews. Data were analysed thematically. RESULTS: Twenty-five health professionals (including perinatal/paediatric pathologists and anatomical pathology technologists, obstetricians, fetal medicine consultants and bereavement midwives, intensive care consultants and family liaison nurses, a consultant neonatologist and a paediatric radiologist) and four coroners participated. Participants viewed less invasive methods of autopsy as a positive development in prenatal and paediatric care that could increase autopsy rates. Several procedural and psychological benefits were highlighted including improved diagnostic accuracy in some circumstances, potential for faster turnaround times, parental familiarity with imaging and laparoscopic approaches, and benefits to parents and faith groups who object to invasive approaches. Concerns around the limitations of the technology such not reaching the same levels of certainty as full autopsy, unsuitability of imaging in certain circumstances, the potential for missing a diagnosis (or misdiagnosis) and de-skilling the workforce were identified. Finally, a number of implementation issues were raised including skills and training requirements for pathologists and radiologists, access to scanning equipment, required computational infrastructure, need for a multidisciplinary approach to interpret results, cost implications, equity of access and acceptance from health professionals and hospital managers. CONCLUSION: Health professionals and coroners viewed less invasive autopsy as a positive development in perinatal and paediatric care. However, to inform implementation a detailed health economic analysis and further exploration of parental views, particularly in different religious groups, are required
Digital PCR Analysis of Maternal Plasma for Noninvasive Detection of Sickle Cell Anemia
Delivering genome sequencing for rapid genetic diagnosis in critically ill children: parent and professional views, experiences and challenges
Rapid genomic sequencing (RGS) is increasingly being used in the care of critically ill children. Here we describe a
qualitative study exploring parent and professional perspectives around the usefulness of this test, the potential for
unintended harms and the challenges for delivering a wider clinical service. The Rapid Paediatric Sequencing (RaPS) study
offered trio RGS for diagnosis of critically ill children with a likely monogenic disorder. Main and actionable secondary
findings were reported. Semi-structured interviews were conducted with parents of children offered RGS (n = 11) and
professionals (genetic clinicians, non-genetic clinicians, scientists and consenters) (n = 19) by telephone (parents n = 10/
professionals n = 1) or face-to-face (parents n = 1/professionals n = 18). We found that participants held largely positive
views about RGS, describing clinical and emotional benefits from the opportunity to obtain a rapid diagnosis. Parental stress
surrounding their child’s illness complicates decision making. Parental concerns are heightened when offered RGS and
while waiting for results. The importance of multidisciplinary team working to enable efficient delivery of a rapid service
was emphasised. Our findings give insight into the perceived value of RGS for critically ill children. Careful pre-test
counselling is needed to support informed parental decision making. Many parents would benefit from additional support
while waiting for results. Education of mainstream clinicians is required to facilitate clinical implementatio
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