Jackie Leach Scully

Jackie Leach Scully
UNSW Sydney | UNSW · School of Humanities and Languages

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84
Publications
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1,812
Citations

Publications

Publications (84)
Article
Full-text available
This article provides a critical comparative analysis of the substantive and procedural values and ethical concepts articulated in guidelines for allocating scarce resources in the COVID-19 pandemic. We identified 21 local and national guidelines written in English, Spanish, German and French; applicable to specific and identifiable jurisdictions;...
Article
Pandemics such as COVID-19 place everyone at risk, but certain kinds of risk are differentially severe for groups already made vulnerable by pre-existing forms of social injustice and discrimination. For people with disability, persisting and ubiquitous disablism is played out in a variety of ways in clinical and public health contexts. This paper...
Technical Report
Full-text available
This is a submission in relation to the Privacy Amendment (Public Health Contact Information) Bill 2020. The draft Bill, amending the Privacy Act 1988 (Cth), sets out the conditions for operation of the COVIDSafe app scheme which the Commonwealth government has introduced. In this submission we set out our concerns about the extent of the privacy p...
Chapter
Current genetic intervention against disease and disability relies on prenatal genetic testing and the option of termination or on the expensive and demanding process of preimplantation genetic diagnosis. By contrast, gene editing promises to increase reproductive choice through therapeutic and restorative interventions that avoid the ethical issue...
Article
The work of a bioethicist carries distinctive responsibilities. Alongside those of any worker, there are responsibilities associated with giving guidance to practitioners, policy makers and the public. In addition, bioethicists are professionally exposed to and required to identify situations of moral trouble, and as a result may find themselves ch...
Chapter
This case study illustrates nondirected, paired, or pooled organ donation schemes. Paired donation schemes have been established relatively recently in a number of countries, including the US and Korea. Pooled donation can include pairs and single altruistic donors, in a chain of interventions. On the face of it, the schemes are promising solutions...
Article
The aim of this collection is to develop new theoretical and practical approaches to address the responsibilities created by new forms of healthcare practice. In particular, the authors examine the significance of people’s key relationships, such as family and community, and how they deliberate and make decisions about their responsibilities. Each...
Article
Epistemic injustice is the idea that social power ensures that the knowledge of some groups is excluded from the collective epistemic resources. In this paper, I argue that there are distinctive features of disabled life that, because they shape the processes through which knowledge is gathered, evaluated, judged, and disseminated, also influence t...
Article
Study/Objective To explore how the notion of “vulnerable populations” is understood and used in the policies and practices of international humanitarian organizations, and to consider its ethical implications for crisis-affected populations and humanitarian actors. Background Humanitarian organizations have responded to evidence that particular gr...
Article
Mitochondrial replacement techniques (MRT) are intended to avoid the transmission of mitochondrial diseases from mother to child. MRT represent a potentially powerful new biomedical technology with ethical, policy, economic and social implications. Among other ethical questions raised are concerns about the possible effects on the identity of child...
Chapter
Ethical challenges arise in the investigations of missing persons cases from the prioritization of casework to the management of privacy of individual families. Cultural differences may affect how an investigation should be handled, and secrets may be revealed without careful navigation of the information supplied and discovered during an investiga...
Article
Full-text available
This paper explores the experiences of members of faith groups deciding whether or not to use new reproductive or genetic technologies (NRGTs). It is based on 16 in-depth, semi-structured interviews with people with direct experience of NRGTs. Participants identified as members of Christian or Muslim faith traditions and had been faced with decidin...
Article
Full-text available
Recent developments in professional healthcare pose moral problems that standard bioethics cannot even identify as problems, but that are fully visible when redefined as problems in the ethics of families. Here, we add to the growing body of work that began in the 1990s by demonstrating the need for a distinctive ethics of families. First, we discu...
Article
Empirical knowledge of how DNA matching for identifications following mass fatality events is used, and how it interacts with existing social practices and values, is important not only to enlarge our understanding of the technology but also to inform normative thinking about its use. This paper draws on preliminary empirical material from a study...
Chapter
Christoph Rehmann-Sutter: One of the recurrent topics in your work is the philosophical and ethical trouble that arises from the fact that we humans have bodies that vary to quite astonishing degrees, and at the same time we live within a culture that neglects this variability and instead cherishes an ideal of a human body. The body is mainstreamed...
Article
This article reviews recent developments within a number of academic disciplines pointing toward an increasing importance of imagination for understanding morality and cognition. Using elements from hermeneutics and metaphor theory, it works toward a framework for a more context-sensitive understanding of human agency, especially focusing on moral...
Article
This narrative symposium examines the relationship of bioethics practice to personal experiences of illness. A call for stories was developed by Tod Chambers, the symposium editor, and editorial staff and was sent to several commonly used bioethics listservs and posted on the Narrative Inquiry in Bioethics website. The call asked authors to relate...
Article
Kim Q. Hall, Feminist disability studies, Bloomington: Indiana University Press, 2011, reviewed by Jackie Leach Scully
Article
The last few years have seen feminist bioethics experiencing a growing interest in the theme of disability: how bioethics as a whole can or should approach disability, and how the different perspectives brought by feminist bioethics can contribute to bioethical thinking about it. This interest was apparent in the pioneer work of disabled feminists...
Book
In this multi-disciplinary collection we ask the question, 'What did, and do, Quakers think about good and evil?' There are no simple or straightforwardly uniform answers to this, but in this collection, we draw together contributions that for the first time look at historical and contemporary Quakerdom's approach to the ethical and theological pro...
Chapter
In recent years, disabled people have been organised as a new social movement to promote their civil and human rights. At the same time, advances in genetic knowledge, especially the development of prenatal and preconception screening programmes, offer active selection against the birth of people with genetically based disability. Many disabled peo...
Article
Full-text available
This article considers the issues raised by the use of DNA profiling on the remains of the bodies of those lost during the battle of Fromelles in the First World War. In 2009, 250 sets of human remains, from Australian and British war dead, were excavated from the site. DNA profiles from the remains were matched with those of descendants and relati...
Chapter
Disability is connected to the contemporary life sciences in obvious and less obvious ways. A key justification for human genetic research is that it will lead to better understanding of the ‘normal’ human genome and thus of genetically based disability. However, there is abundant evidence that people with physical and mental impairments remain sti...
Article
Full-text available
A recent issue of New Genetics and Society included an exchange between Hill (2011) and Turney (2011) discussing an earlier paper on the use of DNA identification in the Australian bushfires disaster of 2009 (Turney 2010). An editor’s introduction to the exchange solicited further observations on the issues raised by the two participants (Glasner 2...
Article
Full-text available
This paper is based on linked qualitative studies of the donation of human embryos to stem cell research carried out in the United Kingdom, Switzerland, and China. All three studies used semi-structured interview protocols to allow an in-depth examination of donors' and non-donors' rationales for their donation decisions, with the aim of gaining in...
Chapter
Over the past few decades, political and social changes coupled with medical advances have opened up new spaces for thinking about physical and mental deviations from the norm. Disability today can be framed as an emancipatory movement and minority rights issue; a biomedical phenomenon; an emergent political identity; a set of social relationships...
Article
Since a high-profile case in 2002, the potential use of reproductive technology to select for rather than against a disability has attracted considerable bioethical and popular attention. The ethical wrongness and the likelihood of 'choosing disability' were considered severe enough to warrant the insertion of a section in the human Fertilisation a...
Chapter
Within the last 20 years, recognition has emerged as a central theme within social and political theory. Recognition can be understood in this context as the processes by which a person’s or group’s claims to and about their identity are acknowledged. As novel identity groups organise around the belief that they have been subjected to injustice bec...
Article
:In this paper I consider one effect that disablism has on social interactions between nondisabled and disabled people: the "hidden labor" carried out by disabled people to manage or manipulate the presentation of their impairment to others, and their own and others' emotional responses, in order to achieve their goals. Although such management may...
Article
In this paper I consider one effect that disablism has on social interactions between nondisabled and disabled people: the "hidden labor" carried out by disabled people to manage or manipulate the presentation of their impairment to others, and their own and others' emotional responses, in order to achieve their goals. Although such management may...
Chapter
It has become commonplace to assume that a new technology needs an ethical accompaniment of some kind. But what should this accompaniment aim to achieve? If we ask this question seriously we need to look carefully at all those things that constitute the ethical concerns within the field, including the identity of the ethics itself and its relations...
Article
For some tissue engineering projects human embryonic cells are used. The feature of pluripotency makes them particularly interesting to study and desirable to use. The human embryo, however, is an entity that is in many ways special and precious. It is a being that is in a process of ongoing development-if transferred to the uterus and the conditio...
Chapter
Understanding is always against a background of what is taken for granted, just relied on. - Charles Taylor, “To Follow a Rule” A naturalized bioethics involves taking a more skeptical look at things that mainstream bioethics tends to take for granted. As Margaret Walker writes in the Introduction to this volume, naturalized bioethics grasps that “...
Article
Genomic medicine offers a growing number of methods to diagnose, cure or prevent disability. Although many disabled people welcome these advances, others have reservations about the impact of genetic knowledge on disabled people's lives, arguing that genetic science might exacerbate the deep ambivalence that society as a whole has towards physical...
Article
Full-text available
Couples undergoing IVF in Switzerland may have embryos in excess of their clinical need that they can donate to human embryonic stem cell research. Thus a new practice has emerged in Switzerland when IVF treatment and embryonic stem cell research come into contact. This interface needs to be investigated from an ethical-legal point of view to facil...
Article
Full-text available
The moral status of the human embryo has gained much attention in debates over the acceptability, or otherwise, of human embryonic stem cell research. Far less attention has been paid to the suppliers of those embryos: people who have undergone IVF treatment to produce embryos to assist them to have a baby. It is sociologically and ethically import...
Article
abstract In this paper we question the basis on which judgements are made about the ‘quality’ of the lives of people whose embodied experience is anomalous, specifically in cases of impairments. In moral and political philosophy it is often assumed that, suitably informed, we can overcome epistemic gaps through the exercise of moral imagination: ‘p...
Article
The part played by time in ethics is often taken for granted, yet time is essential to moral decision making. This paper looks at time in ethical decisions about having a genetic test. We use a patient-centred approach, combining empirical research methods with normative ethical analysis to investigate the patients' experience of time in (i) prenat...
Article
Defective retroviruses were used to investigate the effects of the oncogenes v-raf and v-mos on the behaviour of mammary epithelial cells. Cultures of the mammary epithelial cell lines #43 and NMuMG infected with either virus showed obvious areas of overgrowing cells, which were not seen when cells were infected with control viruses not containing...
Article
Full-text available
This article summarises the results of a research project that used a scenario about sex selection of embryos for social reasons as a basis for discussion groups with lay people. The aim of the research was to examine the processes by which non-professionals make ethical evaluations in relation to a contested area in medical genetics. We note in pa...
Article
In this paper we explore lay people's discussions of the controversial topic of social sex selection (SSS). In the UK and many other countries, SSS is prohibited by law. In 2003 the UK Human Fertilisation and Embryology Authority, after an extensive public consultation, decided against changing the existing legislation. However, this initiative and...
Article
In November 2004, the Swiss population voted to accept a law on research using human embryonic stem cells. In this paper, we use Switzerland as a case study of the shaping of the ostensibly ethical debate on the use of embryos in embryonic stem cell research by legal, political and social constraints. We describe how the national and international...
Article
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 eva...
Chapter
Differently situated people understand things differently. One part of ‘situatedness’ is contributed by embodiment. Life as a particular embodiment means not only having experiences that are not shared by people with a different body, but also understanding these experiences in a way that is shaped by this bodily reality. The point of standpoint ep...
Article
Introduction: The concept of deliberate, targeted genetic intervention into the human genome has been under discussion since the early 1960s, and the attendant ethical problems have been well-rehearsed in the professional and public arenas. Somatic genetic interventions in humans have been shown to be possible and to effect substantial amelioration...
Article
At first sight, the answer to “What is a disease?” is straightforward. Most of us feel we have an intuitive grasp of the idea, reaching mentally to images or memories of colds, cancer or tuberculosis. But a look through any medical dictionary soon shows that articulating a satisfactory definition of disease is surprisingly difficult. And it is not...
Article
Although the moral responsibilities of clinicians and researchers in the new genetics are exhaustively reflected upon, much less attention has been paid to the factors affecting the moral reasoning of non-professionals when they reflect on genetic issues. In this paper, we compare the moral evaluations of somatic gene therapy (SGT) made by some of...
Article
ABSTRACT The advent of genetic technologies and of genetic explanations for biomedical phenomena has major implications for disability. They raise the fundamental question of our valuation of variations in human embodiment. In this paper I suggest that the lived experience of a specific embodiment affects the structures of imagination and interpret...
Article
Bioethics traditionally focuses on establishing moral limits between different types of acts. However, boundaries are established by communities and individuals who differ in the constraints shaping their moral world. Phase boundaries, the sites of transition between two physical phases such as a liquid and a gas, provide a metaphor for ‘drawing a...
Article
Full-text available
As the possibility of genetic intervention becomes more concrete, defining and regulating ethically permissible interventions must include a consideration of the implicit as well as explicit consequences. These include the moral implications of defining "enhancement" by reference to a standard of normality. Some authors have called into question th...
Article
We have used reverse transcription followed by polymerase chain reaction amplification to investigate changes in expression of nerve growth factor (NGF) mRNA in immortalized hippocampal neurons after treatment with the glucocorticoids dexamethasone and corticosterone, the glucocorticoid antagonist RU38486, and the gonadal steroids progesterone and...
Article
Nerve growth factor (NFF) is the prototypic member of a family of related neurotrophins (Nts). Although originally defined by its actions in the peripheral and central nervous systems, recent data indicate the presence of extensive interactions between NGF and the endocrine and immune systems steroid hormones are able to modulate the neurosomal exp...
Article
Neurotrophins including nerve growth factor (NGF) are clearly multifunctional and increasing evidence indicates that NGF, in addition to its neurotrophic actions, regulates and is regulated by components of the immune system. In support of this expression of functional trk protooncogene is found, constituting the signal transducing receptor for NGF...
Article
Using a specific enzyme-linked immunosorbent assay (ELISA) for human nerve growth factor (NGF), serum levels in patients with systemic lupus erythematosus (SLE) were measured. We found a consistent increase in NGF levels in SLE patients compared with controls. A good correlation exists between serum NGF level and severity of clinical manifestation....
Article
We have defined a DNA sequence that behaves as an RNA polymerase II termination signal by using the human HeLa cell transient expression system. Surprisingly, this sequence is tripartite, including part of the coding region of the sea urchin H2A histone gene together with two separate sequences in the 3' flanking region of the gene. We demonstrate...
Article
We have defined a DNA sequence that behaves as an RNA polymerase II termination signal by using the human HeLa cell transient expression system. Surprisingly, this sequence is tripartite, including part of the coding region of the sea urchin H2A histone gene together with two separate sequences in the 3' flanking region of the gene. We demonstrate...
Article
An objective evaluation of the anti-androgen effects of spironolactone was performed in a consecutive series of 12 hirsute patients receiving a daily dose of 150 mg; nine completed the study. Using a computer assisted image analyser, hair diameter on two weekly shavings decreased significantly over a 12 month period in three of the patients, althou...
Article
In a consecutive series of thirty-six male and female patients referred with severe acne, the effect of 3 months' treatment with placebo or spironolactone (50-200 mg daily) on sebum excretion and clinical and endocrine status was evaluated double-blind. Twenty-six patients completed the study. Abnormal free androgen indices were found in 27% of the...

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