Background: The research community has a mandate to discover effective treatments for neurodegenerative disorders. The ethics landscape surrounding this mandate is in a constant state of flux, and ongoing challenges place ever greater demands on investigators to be accountable to the public and to answer questions about the implications of their work for health care, society, and policy. Methods: We surveyed US-based investigators involved in neurodegenerative diseases research about how they value ethics-related issues, what motivates them to give consideration to (...) those issues, and the barriers to doing so. Using the NIH CRISP database we identified 1,034 researchers with relevant, active grants and invited them to complete an online questionnaire. We received 193 responses. We used exploratory factor analysis to transform individual survey questions into a smaller set of factors, and linear regression to understand the effect of key variables of interest on the factor scores. Results: Ethics-related issues clustered into two groups: research ethics and external influences. Heads of research groups viewed issues of research ethics to be more important than the other respondents. Concern about external influences was related to overall interest in ethics. Motivators clustered into five groups: ensuring public understanding, external forces, requirements, values, and press and public. Heads of research groups were more motivated to ensure public understanding of research than the other respondents. Barriers clustered into four groups: lack of resources, administrative burden, relevance to the research, and lack of interest. Perceived lack of ethics resources was a particular barrier for investigators working in drug discovery. Conclusions: The data suggest that senior level neuroscientists working in the field of neurodegeneration (ND), and drug discovery specifically, are motivated to consider ethics issues related to their work, but the perceived lack of ethics resources thwarts their efforts. With bioethics centres at more than 50% of the institutions at which these respondents reside, the neuroscience and bioethics communities appear to be disconnected. Dedicated ethical, legal and social implications (ELSI) programs, such as those fully integrated into genetics and regenerative medicine, provide models for achieving meaningful partnerships not yet adequately realized for scholars and trainees interested in drug discovery for ND. (shrink)
In follow-up to a large-scale ethics survey of neuroscientists whose research involves neuroimaging, brain stimulation and imaging genetics, we conducted focus groups and interviews to explore their sense of responsibility about integrating ethics into neuroimaging and readiness to adopt new ethics strategies as part of their research. Safety, trust and virtue were key motivators for incorporating ethics into neuroimaging research. Managing incidental findings emerged as a predominant daily challenge for faculty, while student reports focused on the malleability of neuroimaging data (...) and scientific integrity. The most frequently cited barrier was time and administrative burden associated with the ethics review process. Lack of scholarly training in ethics also emerged as a major barrier. Participants constructively offered remedies to these challenges: development and dissemination of best practices and standardized ethics review for minimally invasive neuroimaging protocols. Students in particular, urged changes to curricula to include early, focused training in ethics. (shrink)
Kate Millett's book, The Loony-Bin Trip, is an extraordinary account of her personal experience with involuntary psychiatric commitment. The drama of her conflict with professional psychiatry is so tense, so enraging, that one is likely to find oneself having to set the book aside from time to time just to calm down.
Oregon is the only state in the United States where a physician may legally prescribe a lethal dose of barbiturate for a patient intending suicide. The Oregon Death with Dignity Act was passed by voters in 1994 and came into effect after much legal wrangling in October of 1997. At the same time, a cabinetmaker named Pat Matheny was struggling with progressive weakness from amyotrophic lateral sclerosis, or ALS. I met with Pat and his family for a lengthy interview in (...) October 1998 in Coos Bay, Oregon, for a television news report on his decision to get a lethal prescription. Below is an extract from that interview. On the day this introduction was written, 10 March 1999, Pat took the prescribed lethal overdose of barbiturates and died at home. His illness was taking his voice, he could not move his hands or legs, and breathing was becoming very difficult. His mother told me he knew that was for him. (shrink)
CHOMSKY: Any stance we take is based on some conception of what is good for people. This conception will tacitly presuppose a certain belief as to the constitution of human nature -- human needs and human potential. You might as well bring them out as clearly as possible so that they can be discussed.
In an imagined letter to the author of My Gender Workbook, the author of this article recounts classroom discussions about gender identity that led to profound questions regarding the relation between sex, gender, and sexuality. The author argues that more conversation between bisexual and transgender perspectives would continue to unsettle conceptual frameworks for sexuality in helpful ways. The author finds special consequences in this conversation for the concept of gender, especially when it is considered as a reference point for self-exploration (...) and classification. (shrink)
In Search of Immortality: The Political Economy of Anti-aging Medicine Content Type Journal Article Category Original Paper Pages 267-279 DOI 10.1007/s12376-009-0020-x Authors Alan Petersen, Monash University Sociology Program, School of Political and Social Inquiry Clayton VIC 3800 Australia Kate Seear, Monash University Sociology Program, School of Political and Social Inquiry Clayton VIC 3800 Australia Journal Medicine Studies Online ISSN 1876-4541 Print ISSN 1876-4533 Journal Volume Volume 1 Journal Issue Volume 1, Number 3.
As a teacher and philosopher, Dr.Kate Lindemann has spent much of herprofessional life thinking about morality inhuman relationships. Critical analyses aboundabout the obligations and particularresponsibilities of health care providers topatients, teachers to students, etc. Suchanalyses often emphasize the inherentinequality, and thusvulnerability, of those who are the recipientsof care or knowledge. Though familiar with theethics of care as a moral framework, Dr.Lindemann's perspectives on such relationshipswere profoundly affected and foreveraltered after acquiring a brain injury in1998. The current manuscript describes how (...) herviews on caring acts as not only dynamic butreciprocal have been shaped by her experiencesduring rehabilitation andas a person now living with disability. (shrink)
`This book contributes to the growing debates about social theory and its role through a discussion of the ways in which gender and race contributed to the exclusion of important thinkers from the sociological canon' - John Hughes, Lancaster University Who makes up the `canon' of sociology - and who doesn't? And does sociology need a canon in the first place? Beyond Social Theory offers an innovative and passionate contribution to current debates on the history and development of sociology and (...) the exclusion of theorists - who are female, black, or both - from the mainstream of social theorizing. With compelling biographical sketches bringing the dynamics behind the `canon' to life, Kate Reed focuses sharp analysis on the exclusion of theorists on race and gender from important debates on inequality. An important contribution to the debate on non-exclusionary theory, this book critically examines existing accounts of the history of the discipline, situating the development of social theory within a wider social and political context. (shrink)
Materializing absence, Jenny Hockey, Carol Komaromy and Kate Woodthorpe -- Never say die: CPR in hospital space, Susie Page -- Making hospice space, Ken Worpole -- Dying spaces in dying places, Carol Komaromy -- The materialities of absence after stillbirth: historical perspectives, Jan Bleyen -- Distributed personhood and the transformation of agency: an anthropological perspective on inquests, Susan Langer -- Behind closed doors? corpses and mourners in English and American funeral premises, Sheila Harper -- Private grief in public spaces: (...) interpreting memorialisation in the contemporary cemetary, Kate Woodthorpe -- Wandering lines and cul-de-sacs: trajectories of ashes in the United Kingdom, Leonie Kellaher, Jenny Hockey and David Prendergast -- Natural burial: the de-materialising of death?, Andy Clayden, Jenny Hockey and Mark Powell -- What will the neighbours say? reactions to field and garden burial, Tony Walter and Clare Gittings -- Memorialising the suicide victim: "walking the walk," Caroline Simone -- Potent reminders: an examination of responses to roadside memorials in Ireland, Una McConville and Regina McQuillan -- Geographies of the spirit world, Douglas J. Davies -- Recovering presence, Jenny Hockey, Carol Komaromy and Kate Woodthorpe. (shrink)
Jones, Kate Aboriginal people who live with the effects of extreme poverty face high barriers to a quality of life that other Australians enjoy. Aboriginal people have poor health that is directly linked to unmet housing needs, absent or structurally impaired kitchen, bathroom and laundry facilities, malnutrition, unemployment, and poor education retention.
Jones, Kate Patients need both time and support if they are to participate in a model of shared medical decision making with their physicians. This paper explores the implications of patient centred care, identifies a significant barrier to patient participation in decision making, and suggests recommendations for an ethical approach to the provision of decision making support.
Jones, Kate An underlying tenet guiding this article is that every person is unique. Whilst a philosophical uncertainty exists in knowing how to discuss important issues for people facing death, we can be guided by our faith, ethical reflection, and the published and public material of dying people, and their carers.
Jones, Kate Wide spread media newsprint articles suggest our emergency medical departments are in a state of crisis. The purpose of this article is to examine a snapshot of emergency medicine performance data to provide some context in which to respond to this issue.
Jones, Kate The shortage of registered nurses in Australia necessitates that management move their attention towards those organisational dynamics, which improve the retention of nurses, reducing the potential for high turnover from hospital to hospital. Organisational culture should be considered in the favor of nurses, considering that the model of acute care service provision used by hospitals expects registered nurses to be the professional body entrusted to provide around the clock and continuous patient care.
Jones, Kate The insights into the physiology of the chronic pain are presented, considering the fact that the physiology of pain and the range of personal factors that influence pain are complex. Even though substantial evidence suggests that strategies could be applied to assist chronic pain patients to endure some of the effects of long-term pain, a pain management strategy that works for one person might not be effective for another.
Jones, Kate One of the tensions touching the physician - patient relationship today is the physician's ability to correctly interpret what the patient psychologically and emotionally needs from the medical consultation following the diagnosis of chronic or serious illness. The analysis of the issue goes beyond the concern of what information is given to a patient and begins with the importance of good communication.
Jones, Kate The family unit is entrusted with the responsibility to nurture life. It is intended by our Creator to be a nurturing, loving place where the family members, through mutual respect, learn the significance of relationship. The ethical problems for nurses in responding to concerns of child abuse are discussed here, with a call to the whole community to invest in creating a safer place for children.
Jones, Kate This article is especially concerned with aspects of neonatal care where considerable uncertainty in prognosis preceding death creates unique ethical dilemmas. Emphasis is initially given to the dynamics of uncertainty, and the need for medical care to be administered with compassion, and follows with the idea that ethical principles can guide difficult decisions by forming a symbolic navigational compass.