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To link to full-text access for this article, visit this link: http://dx.doi.org/10.1016/j.socscimed.2005.12.013 Byline: Jackie Leach Scully (a), Sarah Banks (b), Tom W. Shakespeare (c) Keywords: Bioethics; Prenatal social sex selection; Lay ethics; Relational autonomy; UK Abstract: Assisted reproductive technologies are typically positioned as increasing the range of choices open to the healthcare consumer, thereby enhancing 'reproductive freedom'. In this paper, we question the equivalence of reproductive choice and personal freedom in ethical theory, using results from a project investigating how lay people make ethical evaluations about the new genetic and reproductive technologies. We took the topic of social sex selection by preimplantation genetic diagnosis (PGD), and used group discussions and interviews in the north-east of England to trace how lay people develop and express their ethical evaluations, and to identify the implicit or explicit normative framework that gave rise to their opinions on prenatal sex selection. There was a striking level of ambivalence towards choice in general and reproductive choice in particular. Participants offered few positive statements and numerous reasons why reproductive choice might be problematic. Our participants' argumentation shares with mainstream bioethical analysis the weighing of the possible harms of prenatal sex selection for social reasons against the harm of restricting reproductive freedom. However, unlike most secular-liberal bioethicists, many of our participants concluded that prenatal sex selection is undesirable because it is an expression of parental preference instead of a response to the future child's need. Our interpretation of their reasoning is that they work from an ideal of 'good parents', one of the features of which is the relinquishing of control over their children, except to protect them from harm. This voluntary self-limitation does not indicate reduced autonomy, because parental autonomy can only operate within the limits set by this relational framework. We suggest that a model of relational autonomy captures our lay participants' framing of the problem better than a more traditional understanding of autonomy. Our study also shows that in appropriately structured discussion of bioethical issues, lay people can articulate reasons for their opinions that are grounded in sophisticated and morally relevant concepts. Author Affiliation: (a) Unit for Ethics in the Biosciences, University of Basel, 4056 Basel, Switzerland (b) School of Applied Social Sciences, University of Durham, UK (c) Policy, Ethics and Life Sciences Research Institute, University of Newcastle, UK

Families of children with disabilities experience stigma by association with their child. This article examines social and internalised stigma experienced in the family by caregivers who participated in a caregiver programme in Ghana. Stigma is pervasive, and gendered, with most mothers blamed for bringing disability into the home. Emotional distress, isolation and lack of support are common experiences. We argue that the mothers can experience forms of disablism. Stigma is multi-layered, and a range of factors intersect with disability-related stigma, including poverty. A support group model can have a positive impact on caregiver internalised stigma and begin to address isolation. This should be part of a wider package of support to address wider structural issues. Families can play an important role in mediating change, but first we need to better understand the social disruption caused by disability-related stigma at the familial level. Stigma amongst family members with a child with cerebral palsy, is very common in the Ghana context, and fuelled by traditional beliefs. Caregiving and disability-related stigma is gendered. The stigma of childhood disability is often associated with women's role in child bearing and rearing. Better engagement with fathers, and other key members of the family, is needed. Emotional distress, isolation and lack of support are common caregiver experiences in Ghana. A support group model for caregivers has an impact on how they feel about themselves, reducing levels of self-blame and feelings of isolation. We know that the quality of caregiving is really important in the early years of a child's development, so it is important to address any stigma. Factors, such as poverty, play a role in fuelling stigma. These other factors also need to be addressed if we want to reduce levels of stigma experienced by families. [ABSTRACT FROM AUTHOR]

Globally, people with disabilities face a heightened risk of poverty. Drivers of poverty include exclusion from work and other livelihood activities (indirect costs) and disability-related direct costs – such as for rehabilitation, personal assistance and assistive devices – that are required for participation and functioning. This research explores sources of direct and indirect costs, their impact and mitigation strategies using 42 in-depth interviews with working-aged people with disabilities in Nairobi, Kenya and Dhaka, Bangladesh. This research finds that people with disabilities and their households face high direct costs, such as for healthcare, assistive devices, transportation and accommodations at school and work, and indirect costs, such as un- and underemployment and lower salaries when working. Many direct costs were unmet, or covered through out-of-pocket spending, although social protection in Kenya was also an important strategy. Unmet direct costs frequently led to higher future indirect costs. Direct and indirect costs could cause financial strain, decreased participation, health and wellbeing, particularly when unaddressed. Challenges mitigating costs included not just insufficient income, but also lack of decision-making power within the household and insufficient information on and poor availability of needed goods, services and opportunities – factors which should be considered in the design of interventions. [ABSTRACT FROM AUTHOR]

Issues are discussed concerning the absence of disability perspectives from research on the cultural construction of genetics. Specifically, the medical establishment's discourse on disability is contrasted with that of disabled peoples' civil rights movement. Increased communication between the stakeholders in genetics is advocated.

This paper reports on in‐depth qualitative interviews conducted with 69 disabled people in England and Scotland, and with 28 key informants from infrastructure organisations in the voluntary and statutory sectors, about the impact of COVID‐19, and measures taken to control it. Participants were recruited through voluntary organisations. As with everyone, the Pandemic has had a huge impact: we discuss the dislocations it has caused in everyday life; the failures of social care; the use of new technologies; and participants' view on leadership and communication. We conclude with suggestions for urgent short term and medium term responses, so that the United Kingdom and other countries can respond better to this and other pandemics, and build a more inclusive world. [ABSTRACT FROM AUTHOR]

Background: The Global Burden of Disease attributable to psychotic disorders in African countries is high and has increased sharply in recent years. Yet, there is a scarcity of evidence on effective, appropriate and acceptable interventions for schizophrenia and other psychotic disorders on the continent. Methods: We carried out a systematic review and narrative synthesis of peer-reviewed literature evaluating the impact of non-pharmacological interventions for adolescents and adults (10–65 years) in African countries. Two reviewers independently double-screened all articles and performed data extraction and quality appraisal using standardized tools. Results: Of the 8529 unique texts returned by our search, 12 studies were identified for inclusion, from seven countries: Egypt, Ethiopia, Ghana, Kenya, Nigeria, South Africa and Sudan. They evaluated a range of interventions with one or more clinical, psychological or psychosocial, education or awareness or traditional or faith-based components, and were delivered by either mental health specialists or non-specialist health workers. Ten of the 12 included studies reported significant, positive effects on a range of outcomes (including functioning, symptoms and stigma). Nearly half of the interventions were based out of health facilities. Based on quality appraisals, confidence in these studies' findings is only rated low to medium. Conclusion: Further research is needed to develop and evaluate interventions that meet the diverse needs of people with psychosis, within and beyond the health sector. [ABSTRACT FROM AUTHOR]

This paper explores the Dementia Enquirers approach to dementia research, and the 10 local projects which have been funded in the first wave of the programme. The paper is written by six people with dementia with expertise by experience, supported by a traditional academic with expertise by research. This co-production enables the voices of people with dementia to be heard, and expands the field of disability studies. The authors discuss problems with traditional academic research, and the different ways that people with dementia go about research. Two examples of research projects led by people with dementia are discussed. The paper explores difficulties people with dementia have had with formal research ethics procedures and how they propose to do things differently. In conclusion, the authors challenge mainstream dementia research to do things differently, and to understand the potential contributions of people with dementia. People with dementia can conduct research People with dementia understand ethics and can come to considered judgements about capacity, consent and the risk of harm. People with dementia may sometimes enjoy advantages in their ways of working Mainstream research and research governance needs to adapt, if people with dementia are to be included. [ABSTRACT FROM AUTHOR]