ORCID Profile
0000-0002-7637-1225
Current Organisation
University of New South Wales
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Research Topics
In Research Link Australia (RLA), "Research Topics" refer to ANZSRC FOR and SEO codes. These topics are either sourced from ANZSRC FOR and SEO codes listed in researchers' related grants or generated by a large language model (LLM) based on their publications.
Top 5 Research Topics
ANZSRC Field of Research (FoR)
Applied Ethics | Sociology and Social Studies of Science and Technology | Communication Technology and Digital Media Studies | Bioethics (human and animal) | Communication and Media Studies | Social and Cultural Anthropology | Medical Ethics | Law and Society |
ANZSRC Socio-Economic Objective (SEO)
Expanding Knowledge through Studies of Human Society | Bioethics | Social Structure and Health | Evaluation of Health Outcomes | The Media | Women's Health | Structure, Delivery and Financing of Community Services
Related Links
Publications
Disability and genetics in the era of genomic medicine
Publisher: Springer Science and Business Media LLC
Date: 10-2008
DOI: 10.1038/NRG2453
Abstract: 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 difference and anomaly. It is also possible, however, that being able to specify the genetic bases of disability, and distinguish them from other causative factors, will contribute to a fuller understanding of disability and a better response to disabled people.
Sourcing human embryonic tissue: The ethical issues
Publisher: Springer Berlin Heidelberg
Date: 2009
From she would say that, wouldn't she? to does she take sugar? epistemic injustice and disability
Publisher: University of Toronto Press Inc. (UTPress)
Date: 02-2018
Abstract: 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 the ways in which epistemic injustice is experienced by disabled people. These features include the ascription of a global epistemic incapacity to people affected by impairment. Against a background of contemporary political shifts and biotechnology innovation, the implications of epistemic injustice for disabled people are serious.
Donating Embryos to Stem Cell Research: The Problem of Gratitude
Publisher: Springer Science and Business Media LLC
Date: 04-01-2012
'You don't make genetic test decisions from one day to the next' - Using time to preserve moral space
Publisher: Wiley
Date: 14-03-2007
DOI: 10.1111/J.1467-8519.2007.00546.X
Abstract: 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) prenatal testing of a foetus for a genetic condition, (ii) predictive or diagnostic testing for breast and colon cancer, or (iii) testing for Huntington's disease (HD). We found that participants often manipulated their experience of time, either using a stepwise process of microdecisions to extend it or, under the time pressure of pregnancy, changing their temporal 'depth of field'. We discuss the implications of these strategies for normative concepts of moral agency, and for clinical ethics.
From the editors
Publisher: University of Toronto Press Inc. (UTPress)
Date: 08-2017
DOI: 10.3138/IJFAB.10.2.1
Inheritable genetic modification and disability: Normality and identity
Publisher: Cambridge University Press
Date: 2006
Chance, choice and control: Lay debate on prenatal social sex selection
Publisher: Elsevier BV
Date: 07-2006
DOI: 10.1016/J.SOCSCIMED.2005.12.013
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.
Taking bioethics personally
Publisher: Project MUSE
Date: 2013
Abstract: 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 a personal story of being ill or caring for a person who is ill, and to describe how this affected how they think about bioethical questions and the practice of medicine. Eighteen in iduals were invited to submit full stories based on review of their proposals. Twelve stories are published in this symposium, and six supplemental stories are published online only through Project MUSE. Authors explore themes of vulnerability, suffering, communication, voluntariness, cultural barriers, and flaws in local healthcare systems through stories about their own illnesses or about caring for children, partners, parents and grandparents. Commentary articles by Arthur Frank, Bradley Lewis, and Carol Taylor follow the collection of personal narratives.
NGF: not just for neurons.
Publisher: Wiley
Date: 05-1995
Abstract: 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 expression NGF, while functional NGF receptors have been detected on cells of the immune system, and increased levels of NGF protein are found during the acute phase of diseases with a significant inflammatory component. These wider functions are likely to be of concern in any attempted therapeutic use of NGF.
Women, theology and the human genome project
Publisher: SAGE Publications
Date: 1998
Drawing a line: Situating moral boundaries in genetic medicine
Publisher: Wiley
Date: 06-2001
Abstract: Bioethics traditionally focuses on establishing moral limits between different types of acts. However, boundaries are established by communities and in iduals 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 line' in bioethics discourse. Phase boundaries occur where the physical constraints allow both phases to coexist in stable equilibrium. This relationship can also be considered in reverse, using the known position of the phase boundary to disclose the physical constraints. By analogy, instead of trying to locate the 'correct' moral boundary, the alternative perspective of 'reverse ethics' works from a commonly accepted boundary to examine the constraints of the moral world that are being used to establish it. Genetic interventions into the human body provide interesting ex les of boundary establishment. In gene therapy, focusing on boundaries has resulted in a model of moral permissibility that ignores some alternative standpoints and increases the potential for conflict between them. Reverse ethics examines such conflicts in terms of the nature of moral worlds that have come into contact with each other, taking seriously the ersity of factors governing the location of a boundary, in ways that might help shift some entrenched lines of conflict.
Approaching disaster victim identification
Publisher: Informa UK Limited
Date: 03-07-2014
Transformation of a mammary epithelial cell line by the v‐raf and v‐mos oncogenes
Publisher: Wiley
Date: 22-04-1991
Abstract: 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 an oncogene. Several clonal cell lines were derived from the areas of overgrowth on #43 cells. Most of these were tumorigenic on subcutaneous inoculation. In culture, several of the cloned lines showed marked morphological abnormalities, had altered rates of growth and saturation densities, and were able to clone in soft agar. Unexpectedly, one raf-containing and one mos-containing line grew more slowly in culture than did control or uninfected cells. Other lines showed only some of these changes. In the mos-containing lines the level of viral transcript corresponded approximately to the extent of transformation, whereas the raf-containing lines showed no such correlation.
Exploring the Barriers and Enablers for the Equitable and Accessible Informed Healthcare Consent Process for People with Intellectual Disability: A Systematic Literature Review
Publisher: Cold Spring Harbor Laboratory
Date: 07-03-2023
DOI: 10.1101/2023.03.06.23286791
Abstract: To identify the factors that act as barriers to, or enablers of, proper informed consent for healthcare interventions for people with intellectual disability. Systematic literature review. No funding sources or conflicts of interest are reported. Databases: Embase, MEDLINE, PsychINFO, PubMed, SCOPUS, Web of Science, and CINAHL (last searched January 2022). Additional articles were obtained from an ancestral search of included articles and hand-searching of three journals. Included studies must examine the informed consent process for a healthcare intervention, be published from 1990 onwards, available in English, and be original research published in a peer-reviewed journal, and participants must be adults and relevant stakeholders (including people with intellectual disability, health professionals, carers or support people, or relevant professionals). Inductive thematic analysis using a six-phase method was used to identify factors affecting informed consent. The QualSyst tool was used to assess quality and biases of included studies. Twenty-three studies were included, published from 1999 to 2020, with a mix of qualitative (n=12), quantitative (n=6) and mixed-methods (n=4) studies. Study sizes ranged from 13 to 604 (median 23), and participants included people with intellectual disability, health professionals, carers and support people, and other professionals working with people with intellectual disability. Six themes were identified: health professionals’ attitudes towards and lack of education about informed consent, provision of health information, involvement of carers and other support people, systemic constraints, specific care needs due to patient-related factors, and effective communication between health professionals and patients. Limitations included the heterogeneity of studies, the focus on people with mild intellectual disability only, lack of reflexivity, and limited use of inclusive co-design research methods (n=5). Health professionals’ attitudes and lack of training in informed consent for people with intellectual disability is a major barrier to proper healthcare informed consent for people with intellectual disability. The lack of accessible health information provided for people with intellectual disability also prevents proper informed consent and decision-making. Other factors are the involvement of carers and support people, inherent systemic constraints, failure to meet specific care needs of people with intellectual disability, and ineffective communication by health professionals. Further research, particularly using inclusive co-design methods, is needed to understand these factors. Practical solutions to address these barriers, such as creating accessible information resources and training health professionals, are needed to support improved proper healthcare informed consent for people with intellectual disability. PROSPERO number CRD42021290548
Chapter 24 Neurotrophins: Signals between the nervous and immune systems
Publisher: Elsevier
Date: 1994
DOI: 10.1016/S0079-6123(08)61144-9
Abstract: There is considerable heterogeneity in in iduals' risk of disease and thus the absolute benefits and harms of population-wide screening programmes. Using colorectal cancer (CRC) screening as an exemplar, we explored how people make decisions about screening when presented with information about absolute benefits and harms, and how those preferences vary with baseline risk, between screening tests and between in iduals. We conducted two linked studies with members of the public: a think-aloud study exploring decision making in-depth and an online randomised experiment quantifying preferences. In both, participants completed a web-based survey including information about three screening tests (colonoscopy, sigmoidoscopy, and faecal immunochemical testing) and then up to nine scenarios comparing screening to no screening for three levels of baseline risk (1%, 3% and 5% over 15 years) and the three screening tests. Participants reported, after each scenario, whether they would opt for screening (yes/no). Of the 20 participants in the think-aloud study 13 did not consider absolute benefits or harms when making decisions concerning CRC screening. In the online experiment (n = 978), 60% expressed intention to attend at 1% risk of CRC, 70% at 3% and 77% at 5%, with no differences between screening tests. At an in idual level, 535 (54.7%) would attend at all three risk levels and 178 (18.2%) at none. The 27% whose intention varied by baseline risk were more likely to be younger, without a family history of CRC, and without a prior history of screening. Most people in our population were not influenced by the range of absolute benefits and harms associated with CRC screening presented. For an appreciable minority, however, magnitude of benefit was important.
Where families and healthcare meet
Publisher: BMJ
Date: 10-09-2014
DOI: 10.1136/MEDETHICS-2013-101783
Abstract: 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 1990 s by demonstrating the need for a distinctive ethics of families. First, we discuss what 'family' means and why families can matter so deeply to the lives of those within them. Then, we briefly sketch how, according to an ethics of families, responsibilities must be negotiated against the backdrop of family relationships, treatment decisions must be made in the light of these negotiated responsibilities and justice must be served, both between families and society more generally and within families themselves.
The Human Enhancement Debate and Disability
Publisher: Palgrave Macmillan UK
Date: 2014
Plasmonic Nanoantennas for Multispectral Surface-Enhanced Spectroscopies
Publisher: American Chemical Society (ACS)
Date: 29-08-2013
DOI: 10.1021/JP404535X
Vulnerable Populations: Investigating Ethical Implications for Policies and Practices of International Humanitarian Organizations
Publisher: Cambridge University Press (CUP)
Date: 04-2017
Arguing about Disability
Publisher: Routledge
Date: 27-10-2008
Ordinary ethics: Lay people's deliberations on social sex selection
Publisher: Informa UK Limited
Date: 12-2006
A mitochondrial story: Mitochondrial replacement, identity and narrative
Publisher: Wiley
Date: 14-12-2017
DOI: 10.1111/BIOE.12310
Abstract: 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 children born from MRT, their families, and the providers or donors of mitochondria. It has been suggested that MRT can influence identity (i) directly, through altering the genetic makeup and physical characteristics of the child, or (ii) indirectly through changing the child's experience of disease, and by generating novel intrafamilial relationships that shape the sense of self. In this article I consider the plausibility and ethical implications of these proposed identity effects, but I focus instead on a third way in which identity may be affected, through the mediating influence of the wider social world on MRT effects on identity. By taking a narrative approach, and examining the nature and availability of identity narratives, I conclude that while neither direct genetic nor indirect experiential effects can be excluded, social responses to MRT are more likely to have a significant and potentially damaging influence on the generation of MRT children's narratives of identity. This conclusion carries some implications for the collective moral responsibility we hold to ensure that MRT, if implemented, are practised in ethically justifiable ways.
Experiences of faith group members using new reproductive and genetic technologies: A qualitative interview study
Publisher: Informa UK Limited
Date: 14-11-2017
DOI: 10.1080/14647273.2016.1243816
Abstract: 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 deciding whether or not to make use of novel forms of fertility treatment or genetic testing. The findings show that members of faith groups may experience specific barriers of access, and distinctive ethical difficulties, when considering the use of different forms of NRGTs. Both Christian and Muslim interviewees reported difficulties in obtaining information on the official faith teaching, or found that their faith group had not yet crafted an official position. Participants' needs for information, and the opportunity to discuss the faith implications of their clinical choices, were not being met in either the clinic or the faith setting. This paper concludes that clinics should indicate more clearly their acknowledgement of patients' faith concerns. Appropriate training is needed for both healthcare professionals and chaplains, while faith groups should be encouraged to engage with healthcare providers to ensure that guidance is available to their members.
What does it mean to be made vulnerable in the era of COVID-19?
Publisher: Elsevier BV
Date: 05-2020
Jackie Leach Scully
Publisher: Elsevier BV
Date: 09-2002
How to relate the empirical to the normative: Toward a phenomenologically informed hermeneutic approach to bioethics
Publisher: Cambridge University Press (CUP)
Date: 24-07-2012
Increased levels of NGF in sera of systemic lupus erythematosus patients
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 05-1993
DOI: 10.1097/00001756-199305000-00025
Abstract: 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. We hypothesize that NGF might play a role in the pathogenesis of autoimmune disorders such as SLE.
Glucocorticoids, neurotrophins and neurodegeneration
Publisher: Elsevier BV
Date: 05-1995
Feminist empirical bioethics
Publisher: Cambridge University Press
Date: 30-11-2016
Glucocorticoid modulation of neurotrophin expression in immortalized mouse hippocampal neurons
Publisher: Elsevier BV
Date: 05-1993
DOI: 10.1016/0304-3940(93)90662-5
Abstract: To see whether glucocorticoid hormones can influence the regulation of neurotrophin expression in hippoc al neurons, we have used reverse-transcription followed by polymerase chain reaction to investigate changes in the mRNA levels of nerve growth factor (NGF) and neurotrophin-3 (NT-3) in immortalized hippoc al neurons after dexamethasone application. Our results show that NGF mRNA levels rise in both embryonic and postnatal neurons, but with different time courses, while NT-3 levels rise in the embryonic but not in the postnatally derived cell line. Modulation of NT expression by glucocorticoids may therefore be developmentally regulated.
Ethical Guidance for Hard Decisions: A Critical Review of Early International COVID-19 ICU Triage Guidelines
Publisher: Springer Science and Business Media LLC
Date: 26-10-2021
DOI: 10.1007/S10728-021-00442-0
Abstract: 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 and providing guidance to clinicians for decision making when allocating critical care resources during the COVID-19 pandemic. US guidelines were not included, as these had recently been reviewed elsewhere. Information was extracted from each guideline on: 1) the development process 2) the presence and nature of ethical, medical and social criteria for allocating critical care resources and 3) the membership of and decision-making procedure of any triage committees. Results of our analysis show the majority appealed primarily to consequentialist reasoning in making allocation decisions, tempered by a largely pluralistic approach to other substantive and procedural values and ethical concepts. Medical and social criteria included medical need, co-morbidities, prognosis, age, disability and other factors, with a focus on seemingly objective medical criteria. There was little or no guidance on how to reconcile competing criteria, and little attention to internal contradictions within in idual guidelines. Our analysis reveals the challenges in developing sound ethical guidance for allocating scarce medical resources, highlighting problems in operationalising ethical concepts and principles, ergence between guidelines, unresolved contradictions within the same guideline, and use of naïve objectivism in employing widely used medical criteria for allocating ICU resources.
Neurotrophin expression modulated by glucocorticoids and oestrogen in immortalized hippocampal neurons
Publisher: Elsevier BV
Date: 07-1995
DOI: 10.1016/0169-328X(95)00047-V
Abstract: We have used reverse transcription followed by polymerase chain reaction lification to investigate changes in expression of nerve growth factor (NGF) mRNA in immortalized hippoc al neurons after treatment with the glucocorticoids dexamethasone and corticosterone, the glucocorticoid antagonist RU38486, and the gonadal steroids progesterone and 17-beta oestradiol. We found that NGF mRNA levels rise after application of either dexamethasone or corticosterone, and that this rise is prevented by the antagonist. Thus, neurotrophin expression is modulated by the physiological glucocorticoid and is mediated by type II glucocorticoid receptors. Progesterone has no effect, while 17-beta oestradiol suppresses NGF mRNA in a postnatally-derived cell line but does not change levels in an embryonic line. An increase in neurotrophin expression is therefore not a general response to steroid hormone application, and may be a specific defence against the presence of metabolically endangering glucocorticoids.
Naming the dead: DNA-based identification of historical remains as an act of care
Publisher: Informa UK Limited
Date: 03-07-2014
So, what is an embryo? A comparative study of the views of those asked to donate embryos for hESC research in the UK and Switzerland
Publisher: Informa UK Limited
Date: 06-2008
Response—A Commentary on Miles Little et al. 1998. Liminality: A major category of the experience of cancer illness. Social Science & Medicine 47(10): 1485-1494
Publisher: Springer Science and Business Media LLC
Date: 03-2022
DOI: 10.1007/S11673-021-10145-9
Abstract: This paper by Miles Little and colleagues identified the state they described as "liminal" within the trajectory of cancer survivorship. Since that time the concept of liminality has provided a powerful model to explore some of the difficulties experienced by people with severe and chronic illness. In this commentary I consider the expanding application of liminality not just to a widening range of medical conditions but to the consequences of therapeutic interventions as well and how this expansion has enriched and challenged its use as a conceptual tool.
Gift not commodity? Lay people deliberating social sex selection
Publisher: Wiley
Date: 20-12-2006
DOI: 10.1111/J.1467-9566.2006.00540.X
Abstract: 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 similar consultation exercises have been criticised on the grounds that public opinion is poorly informed and reasoned. In our study, one of the most consistently expressed ideas was that children should be regarded as 'a gift' rather than 'a commodity'. In contrast, the 'gift not a commodity' argument is rarely cited positively in Anglo-American, secular-liberal bioethics. These metaphorical statements are condensed articulations of complex but coherent moral intuitions. Where much of the bioethics literature stresses parental autonomy, our lay discussants balanced this principle with ideas about the need to respect the personhood of the potential child, and the characteristics of a good parent. We conclude our analysis by considering the implications for expanding bioethics' knowledge base and improving the input of lay people in bioethical decision making.
Routledge Handbook of Genomics, Health and Society
Publisher: Routledge
Date: 17-04-2018
'Choosing disability', symbolic law, and the media
Publisher: SAGE Publications
Date: 09-2011
DOI: 10.1177/096853321101100304
Abstract: 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 and Embryology Act 2008 blocking assisted reproduction clinics from knowingly using gametes or embryos with severe genetic defects if alternatives exist. In this paper, I argue that this was a disproportionate response, and in tracing how it came about use this ex le to explore the symbolic function of the law in forming moral opinion, particularly in novel and ethically challenging areas, and the role of the media in conveying both the ‘message’ of the law to the public and the responses of stakeholders back to regulators.
Disability and the thinking body
Publisher: Palgrave Macmillan UK
Date: 2012
Drawing Lines, Crossing Lines: Ethics and the Challenge of Disabled Embodiment
Publisher: SAGE Publications
Date: 05-2003
DOI: 10.1177/096673500301100302
Abstract: 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 interpretation that people use in moral perception and evaluation. As an ex le, I consider recent 'deaf designer baby' cases, suggesting that it is not possible to understand the ethics of the choices made without acknowledging significant differences in embodied experience. To understand embodiment fully means allowing the body itself to take us into unfamiliar territory, including experiences of limitation and difference. I argue that true justice for disabled people will demand insight into different lived experiences and an openness to what other corporeal modes have to teach us
Ethical Challenges in Missing Persons Investigations
Publisher: Springer International Publishing
Date: 2016
Moral Imagination, Disability and Embodiment
Publisher: Wiley
Date: 19-10-2007
When norms normalize: The case of genetic enhancement
Publisher: Mary Ann Liebert Inc
Date: 2001
Abstract: 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 the standard ethical concerns about genetic enhancement, but the distinction between enhancing and therapeutic interventions is still structured as relatively unproblematic. However, determining the boundary between therapy and enhancement will have feedback effects on the socially implemented definitions of what counts as normal in human embodiment. Positioning the interface between permissible and nonpermissible interventions at the same place as the boundaries between therapy and enhancement, and between normal and abnormal embodiment, (1) uses biology to justify a moral evaluation, (2) privileges the single standpoint of the genetically canonical person, and (3) enhances the dichotomy between "normal" and "not normal". Assuming that the limit of permissibility along the interventional continuum is coterminous with the definitions of enhancement and of normality, distracts from the work of uncovering the real grounds to setting limits to genetic manipulation.
Disability, Disablism, and COVID-19 Pandemic Triage
Publisher: Springer Science and Business Media LLC
Date: 25-08-2020
Body alienation and the moral sense of self
Publisher: Project MUSE
Date: 2013
The involvement of rare disease patient organisations in therapeutic innovation across rare paediatric neurological conditions: a narrative review
Publisher: Springer Science and Business Media LLC
Date: 18-04-2022
DOI: 10.1186/S13023-022-02317-6
Abstract: The patient voice is becoming increasingly prominent across all stages of therapeutic innovation. It pervades research domains from funding and recruitment, to translation, care, and support. Advances in genomic technologies have facilitated novel breakthrough therapies, whose global developments, regulatory approvals, and confined governmental subsidisations have stimulated renewed hope amongst rare disease patient organisations (RDPOs). With intensifying optimism characterising the therapeutic landscape, researcher-advocate partnerships have reached an inflexion point, at which stakeholders may evaluate their achievements and formulate frameworks for future refinement. Through this narrative review, we surveyed relevant literature around the roles of RDPOs catering to the rare paediatric neurological disease community. Via available literature, we considered RDPO interactions within seven domains of therapeutic development: research grant funding, industry sponsorship, study recruitment, clinical care and support, patient-reported outcome measures, and research prioritisation. In doing so, we explored practical and ethical challenges, gaps in understanding, and future directions of inquiry. Current literature highlights the increasing significance of ethical and financial challenges to patient advocacy. Biomedical venture philanthropy is gaining momentum amongst RDPOs, whose small grants can incrementally assist laboratories in research, training, and pursuits of more substantial grants. However, RDPO seed funding may encounter long-term sustainability issues and difficulties in selecting appropriate research investments. Further challenges include advocate-industry collaborations, commercial biases, and unresolved controversies regarding orphan drug subsidisation. Beyond their financial interactions, RDPOs serve instrumental roles in project promotion, participant recruitment, biobank creation, and patient registry establishment. They are communication conduits between carers, patients, and other stakeholders, but their contributions may be susceptible to bias and unrealistic expectations. Further insights into how RDPOs navigate practical and ethical challenges in therapeutic development may enhance cooperative efforts. They may also inform resources, whose distribution among advocates, parents, and clinicians, may assist decision-making processes around rare disease clinical trials and treatments.
Non-professionals' evaluations of gene therapy ethics
Publisher: Elsevier BV
Date: 04-2004
A comment on the Hill–Turney exchange: from normative antagonism to interdisciplinary collaboration
Publisher: Informa UK Limited
Date: 21-05-2012
The responsibilities of the engaged bioethicist: Scholar, advocate, activist
Publisher: Wiley
Date: 18-09-2019
DOI: 10.1111/BIOE.12659
Abstract: 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 choosing to work as advocates or activists, with responsibilities that are distinct from those generally acknowledged within academia. The requirement for bioethics to make normative judgements entails taking a stance, which means there cannot be a sharp line between 'academic' or 'objective' bioethics, and advocacy/activism, but a continuum of bioethicists' engagement and an associated continuum of responsibilities.
Disability Rights as a Necessary Framework for Crisis Standards of Care and the Future of Health Care
Publisher: Wiley
Date: 05-2020
DOI: 10.1002/HAST.1128
Moral bodies: Epistemologies of embodiment
Publisher: Cambridge University Press
Date: 13-10-2008
4.11-P16Understanding and operationalizing vulnerability in International Humanitarian Health Organisations
Publisher: Oxford University Press (OUP)
Date: 17-04-2018
Unveiling algorithmic power: exploring the impact of automated systems on disabled people’s engagement with social services
Publisher: Informa UK Limited
Date: 13-07-2023
The role of moral imagination in patients' decision-making
Publisher: Oxford University Press (OUP)
Date: 04-03-2013
DOI: 10.1093/JMP/JHT006
Abstract: 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 deliberation and change. The analytic framework is used to analyze the story of a patient making tough decisions in the context of prenatal diagnosis. We show how a relatively stable outlook on the world, here called the "baseline of choice," is challenged by unexpected events and how imaginative processes enter into the active creation of a new moral order. The ensuing interpretation is then placed within a broader philosophical landscape. John Dewey's notion of "dramatic rehearsal" is put forward as one particularly promising way of understanding moral imagination, deliberation, and decision-making.
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