ORCID Profile
0000-0002-2142-9696
Current Organisation
University of South Australia
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Publisher: BMJ
Date: 24-01-2019
DOI: 10.1136/MEDETHICS-2018-105084
Abstract: In July 2018, the Nuffield Council of Bioethics released its long-awaited report on heritable genome editing (HGE). The Nuffield report was notable for finding that HGE could be morally permissible, even in cases of human enhancement. In this paper, we summarise the findings of the Nuffield Council report, critically examine the guiding principles they endorse and suggest ways in which the guiding principles could be strengthened. While we support the approach taken by the Nuffield Council, we argue that detailed consideration of the moral implications of genome editing yields much stronger conclusions than they draw. Rather than being merely ‘morally permissible’, many instances of genome editing will be moral imperatives.
Publisher: Springer Science and Business Media LLC
Date: 18-07-2023
DOI: 10.1186/S12978-023-01624-W
Abstract: Termination of pregnancy (TOP) is not an uncommon procedure. Availability varies greatly between jurisdictions however, additional institutional processes beyond legislation can also impact care and service delivery. This study serves to examine the role institutional processes can play in the delivery of TOP services, in a jurisdiction where TOP is lawful at all gestations (Victoria, Australia). As per the Abortion Law Reform Act 2008 , TOPs post-24 weeks require the approval of two medical practitioners. However, in Victoria, hospitals that offer post-24 week TOPs generally require these cases to additionally go before a termination review committee for assessment prior to the service being provided. These committees are not stipulated in legislation. Information about these committees and how they operate is scarce and there is minimal information available to the public. To trace the history, function, and decision-making processes of these committees, we conducted a qualitative interview study. We interviewed 27 healthcare professionals involved with these committees. We used purposive s ling to gain perspectives from a range of professions across 10 hospitals. Interviews were transcribed verbatim, identifying details removed and inductive thematic analysis was performed. Here, we report the three main functions of the committees as described by participants. The functions were to protect: (1) outward appearances (2) inward functionality and/or, (3) service users. Function (1) could mean protecting the hospital’s reputation, with the “Herald Sun test”—whether the TOP would be acceptable to readers of the Herald Sun, a tabloid newspaper—used as a heuristic. Function (2) related to logistics within the hospital and protecting the psychological wellbeing and personal reputation of healthcare professionals. The final function (3) related to ensuring patients received a high standard of care. The primary functions of these committees appear to be about protecting hospitals and clinicians within a context where these procedures are controversial and stigmatized. The results of this study provide further clarity on the processes involved in the provision of TOPs at later gestations from the perspectives of the healthcare professionals involved. Institutional processes beyond those required by legislation are put in place by hospitals. These findings highlight the additional challenges faced by patients and their providers when seeking TOP at later gestations.
Publisher: Wiley
Date: 03-2019
DOI: 10.1002/PD.5555
Publisher: Springer Science and Business Media LLC
Date: 13-07-2022
DOI: 10.1038/S41431-022-01140-8
Abstract: Rapid genomic sequencing (rGS) is being increasingly used in neonatal and paediatric intensive care units. While there is emerging evidence of clinical utility and cost-effectiveness, concerns have been raised regarding the impact of delivering genomic results in an acute care setting. To help investigate these concerns, we analysed survey data collected from caregivers whose children had received rGS through a national rapid genomic diagnosis program. The impact of rGS on families was assessed through the PedsQL2.0 Family Impact Module and the State-Trait Anxiety Inventory (STAI-6). Sixty-one parents/carers completed the survey during the study period (response rate 48% 61/128). Mean parent and family functioning was reduced in this s le, reflecting the stressful conditions facing families with critically unwell children. We found caregivers whose children had received a diagnostic result through rGS reported a reduced family relationships score compared to caregivers of children who did not receive a diagnosis. These findings have implications for genetic counselling practice in this setting.
Publisher: Elsevier BV
Date: 11-2023
Publisher: BMJ
Date: 24-01-2019
DOI: 10.1136/MEDETHICS-2018-105167
Abstract: Non-invasive prenatal testing (NIPT) is at the forefront of prenatal screening. Current uses for NIPT include fetal sex determination and screening for chromosomal disorders such as trisomy 21 (Down syndrome). However, NIPT may be expanded to many different future applications. There are a potential host of ethical concerns around the expanding use of NIPT, as examined by the recent Nuffield Council report on the topic. It is important to examine what NIPT might be used for before these possibilities become consumer reality. There is limited research exploring views of women on possible future uses of NIPT, particularly those of women who have undergone NIPT. In this study, we examined the views of women who undertook NIPT previously on the acceptability of and interest levels in using NIPT for a number of current and possible future applications. These included several medical conditions encompassing psychiatric, neurodevelopmental and adult-onset conditions as well as non-medical traits such as intelligence. One thousand women were invited to participate and 235 eligible surveys were received. Women generally reported an interest in using NIPT for medical conditions that severely impacted quality of life and with an onset earlier in life and stressed the importance of the accuracy of the test. Concerns were raised about the use of NIPT for non-medical traits. Respondents indicated that termination of pregnancy was not their only reason for testing, particularly in the case of sex. These results can further inform the ethical debate around the increasing integration of NIPT into healthcare systems.
Publisher: BMJ
Date: 06-2023
Abstract: Genomic sequencing (GS) is increasingly used in paediatric medicine to aid in screening, research and treatment. Some health systems are trialling GS as a first-line test in newborn screening programmes. Questions about what to do with genomic data after it has been generated are becoming more pertinent. While other research has outlined the ethical reasons for storing deidentified genomic data to be used in research, the ethical case for storing data for future clinical use has not been explicated. In this paper, we examine the ethical case for storing genomic data with the intention of using it as a lifetime health resource. In this model, genomic data would be stored with the intention of reanalysis at certain points through one’s life. We argue this could benefit in iduals and create an important public resource. However, several ethical challenges must first be met to achieve these benefits. We explore issues related to privacy, consent, justice and equality. We conclude by arguing that health systems should be moving towards futures that allow for the sequential interrogation of genomic data throughout the lifespan.
Publisher: Wiley
Date: 27-10-2020
DOI: 10.1111/BIOE.12828
Publisher: FapUNIFESP (SciELO)
Date: 2021
Publisher: Springer Science and Business Media LLC
Date: 12-2021
DOI: 10.1007/S40592-021-00142-4
Abstract: The possibilities of non-invasive prenatal testing (NIPT) are expanding, and the use of NIPT for adult-onset conditions may become widely available in the near future. If parents use NIPT to test for these conditions, and the pregnancy is continued, they will have information about the child's genetic predisposition from birth. In this paper, we argue that prospective parents should be able to access NIPT for an adult-onset condition, even when they have no intention to terminate the pregnancy. We begin by outlining the arguments against testing in such a situation, which generally apply the same considerations that apply in the predictive testing of a minor to the fetus in utero. We then contend, firstly, that there are important practical considerations that support availability of testing for prospective parents regardless of their stated intentions. Secondly, we object to the ethical equation of a fetus in utero with a minor. We base our analysis on a view of pregnancy that conceptualises the fetus as a part of the gestational parent, as opposed to the more common 'container' model of pregnancy. We suggest that fetal information is best conceptualised as shared information between the gestational parent and future child. Thus, it should be approached in similar ways as other kinds of shared information (such as genetic information with implications for family members), where a person has a claim over their own information, but should be encouraged to consider the interests of other relevant parties.
Publisher: BMJ
Date: 26-07-2019
Publisher: Springer Science and Business Media LLC
Date: 23-11-2019
DOI: 10.1007/S40592-019-00101-0
Abstract: Here, a moral case is presented as to why sign languages such as Auslan should be made compulsory in general school curricula. Firstly, there are significant benefits that accrue to in iduals from learning sign language. Secondly, sign language education is a matter of justice the normalisation of sign language education and use would particularly benefit marginalised groups, such as those living with a communication disability. Finally, the integration of sign languages into the curricula would enable the flourishing of Deaf culture and go some way to resolving the tensions that have arisen from the promotion of oralist education facilitated by technologies such as cochlear implants. There are important reasons to further pursue policy proposals regarding the prioritisation of sign language in school curricula.
Publisher: Springer Science and Business Media LLC
Date: 12-12-2022
DOI: 10.1038/S41431-022-01256-X
Abstract: Non-invasive prenatal testing (NIPT) has been available commercially in Europe since approximately 2012. Currently, many countries are in the process of integrating NIPT into their publicly funded healthcare systems to screen for chromosomal aneuploidies such as trisomy 21 (Down syndrome), with a variety of implementation models. In 2019, the German Federal Joint Committee (G-BA), which plays a significant role in overseeing healthcare decisions in Germany, recommended that NIPT be reimbursed through public insurance. Following this recommendation, NIPT will be offered on a case-by-case basis, when a pregnant woman, after being counselled, makes an informed decision that the test is necessary in her personal situation. This model differs significantly from many other European countries, where NIPT is being implemented either as a first-tier screening offer available for all pregnancies, or a contingent screen for those with a high probability of foetal aneuploidy (with varying probability cut-offs). In this paper we examine how this unique approach to implementing NIPT in Germany is produced by an ethical and policy landscape resulting from a distinctive cultural and historical context with a significant influence on healthcare decision-making. Due in part to the specific legal and regulatory environment, as well as strong objections from various stakeholders, Germany did not implement NIPT as a first-tier screen. However, as Germany does not currently publicly fund as standard other forms of prenatal aneuploidy screening (such as combined first trimester screening), neither can it be implemented as a screen contingent on specific probability cut-offs. We discuss how German policy reflects the echoes of the past shaping approaches to new biotechnologies, and the implications of this unique model for implementing NIPT in a public healthcare system.
Publisher: Informa UK Limited
Date: 30-11-2021
DOI: 10.1080/15265161.2021.1996659
Abstract: The scope of noninvasive prenatal testing (NIPT) could expand in the future to include detailed analysis of the fetal genome. This will allow for the testing for virtually any trait with a genetic contribution, including "non-medical" traits. Here we discuss the potential use of NIPT for these traits. We outline a scenario which highlights possible inconsistencies with ethical decision-making. We then discuss the case against permitting these uses. The objections include practical problems increasing inequities increasing the burden of choice negative impacts on the child, family, and society and issues with implementation. We then outline the case for permitting the use of NIPT for these traits. These include arguments for reproductive liberty and autonomy questioning the labeling of traits as "non-medical" and the principle of procreative beneficence. This summary of the case for and against can serve as a basis for the development of a consistent and coherent ethical framework.
Publisher: Wiley
Date: 06-02-2019
DOI: 10.1111/AJO.12945
Abstract: Non‐invasive prenatal testing ( NIPT ) has been available in Australia on a user‐pays basis since 2012. Since its introduction, it has grown in popularity as a screening method for fetal aneuploidy and may become publicly funded. To assess the motivations and experiences of women who have undergone NIPT in a user‐pays system in Australia. One thousand women who had undergone NIPT through the Victorian Clinical Genetics Services in Melbourne, Australia were contacted and asked to complete a mixed‐methods survey. The number of eligible responses received was 235. Quantitative data analysis was performed in STATA IC 15.1, and qualitative data were examined using content analysis. Women reported generally positive experiences with NIPT and 95% of respondents indicated they would undergo NIPT in a future pregnancy. Most respondents received a low‐risk result, with 2.2% receiving a high‐risk result. Respondents viewed NIPT favourably compared to invasive testing and cited reassurance as a key reason they sought it. However, a small minority of women reported negative experiences with the testing process. Women were also supportive of NIPT becoming publicly funded, with 93% of respondents indicating support. Pre‐ and post‐test counselling were identified as possible areas for improvement to ensure informed consent. In support of the existing literature, these results indicate that Australian women generally report positive experiences with NIPT . As NIPT becomes more common, with possible integration into public healthcare, further qualitative research would be valuable to examine the motivations and experiences of women undergoing NIPT .
Publisher: Springer Science and Business Media LLC
Date: 23-07-2020
DOI: 10.1007/S12152-020-09445-5
Abstract: Motivational enhancement in sport – a form of ‘neuro-doping’ – can help athletes attain greater achievements in sport. A key question is whether or not that athlete deserves that achievement. We distinguish three concepts – praiseworthiness (whether the athlete deserves praise), prizeworthiness (whether the athlete deserves the prize), and admiration (pure admiration at the performance) – which are closely related. However, in sport, they can come apart. The most praiseworthy athlete may not be the most prizeworthy, and so on. Using a model of praiseworthiness as costly commitment to a valuable end, and situating prizeworthiness within the boundaries of the sport, we argue that motivational enhancement in some cases can be compatible with desert.
Publisher: Universidade Federal de Santa Maria
Date: 10-04-2023
Abstract: The present study aims to analyze the potential of areas for the implementation of ecological corridors. The study area represents a transition between the Atlantic Forest and Cerrado domains and is extensively fragmented. Geographic Information System was used to determine suitable areas for the implementation of ecological corridors based on their ecological and structural potential, while multi-criteria classification was used to generate a final ecological map of the area. Weights and notes were assigned to vegetation class, river width, elevation and declivity in their respective maps, which were overlaid using ArcGis 10.3 software. Structural analysis of the area used the landscape metrics mean area, mean shape and total edge of fragments and mean connectivity among fragments in Fragstats software. The results indicated an ecologically and structurally suitable area for the implementation of ecological corridors in the study area.
Publisher: BMJ
Date: 02-2021
DOI: 10.1136/BMJOPEN-2020-044618
Abstract: The aim of this study was to provide a comprehensive evidence on risk factors for transmission, disease severity and COVID-19 related deaths in Africa. A systematic review has been conducted to synthesise existing evidence on risk factors affecting COVID-19 outcomes across Africa. Data were systematically searched from MEDLINE, Scopus, MedRxiv and BioRxiv. Studies for review were included if they were published in English and reported at least one risk factor and/or one health outcome. We included all relevant literature published up until 11 August 2020. We performed a systematic narrative synthesis to describe the available studies for each outcome. Data were extracted using a standardised Joanna Briggs Institute data extraction form. Fifteen articles met the inclusion criteria of which four were exclusively on Africa and the remaining 11 papers had a global focus with some data from Africa. Higher rates of infection in Africa are associated with high population density, urbanisation, transport connectivity, high volume of tourism and international trade, and high level of economic and political openness. Limited or poor access to healthcare are also associated with higher COVID-19 infection rates. Older people and in iduals with chronic conditions such as HIV, tuberculosis and anaemia experience severe forms COVID-19 leading to hospitalisation and death. Similarly, high burden of chronic obstructive pulmonary disease, high prevalence of tobacco consumption and low levels of expenditure on health and low levels of global health security score contribute to COVID-19 related deaths. Demographic, institutional, ecological, health system and politico-economic factors influenced the spectrum of COVID-19 infection, severity and death. We recommend multidisciplinary and integrated approaches to mitigate the identified factors and strengthen effective prevention strategies.
Publisher: BMJ
Date: 12-2021
DOI: 10.1136/BMJGH-2021-007179
Abstract: The COVID-19 pandemic has overwhelmed health systems in both developed and developing nations alike. Africa has one of the weakest health systems globally, but there is limited evidence on how the region is prepared for, impacted by and responded to the pandemic. We conducted a scoping review of PubMed, Scopus, CINAHL to search peer-reviewed articles and Google, Google Scholar and preprint sites for grey literature. The scoping review captured studies on either preparedness or impacts or responses associated with COVID-19 or covering one or more of the three topics and guided by Arksey and O’Malley’s methodological framework. The extracted information was documented following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension checklist for scoping reviews. Finally, the resulting data were thematically analysed. Twenty-two eligible studies, of which 6 reported on health system preparedness, 19 described the impacts of COVID-19 on access to general and essential health services and 7 focused on responses taken by the healthcare systems were included. The main setbacks in health system preparation included lack of available health services needed for the pandemic, inadequate resources and equipment, and limited testing ability and surge capacity for COVID-19. Reduced flow of patients and missing scheduled appointments were among the most common impacts of the COVID-19 pandemic. Health system responses identified in this review included the availability of telephone consultations, re-purposing of available services and establishment of isolation centres, and provisions of COVID-19 guidelines in some settings. The health systems in Africa were inadequately prepared for the pandemic, and its impact was substantial. Responses were slow and did not match the magnitude of the problem. Interventions that will improve and strengthen health system resilience and financing through local, national and global engagement should be prioritised.
Publisher: BMJ
Date: 02-2021
DOI: 10.1136/BMJOPEN-2020-044606
Abstract: COVID-19 has caused a global public health crisis affecting most countries, including Ethiopia, in various ways. This study maps the vulnerability to infection, case severity and likelihood of death from COVID-19 in Ethiopia. Thirty-eight potential indicators of vulnerability to COVID-19 infection, case severity and likelihood of death, identified based on a literature review and the availability of nationally representative data at a low geographic scale, were assembled from multiple sources for geospatial analysis. Geospatial analysis techniques were applied to produce maps showing the vulnerability to infection, case severity and likelihood of death in Ethiopia at a spatial resolution of 1 km×1 km. This study showed that vulnerability to COVID-19 infection is likely to be high across most parts of Ethiopia, particularly in the Somali, Afar, Amhara, Oromia and Tigray regions. The number of severe cases of COVID-19 infection requiring hospitalisation and intensive care unit admission is likely to be high across Amhara, most parts of Oromia and some parts of the Southern Nations, Nationalities and Peoples’ Region. The risk of COVID-19-related death is high in the country’s border regions, where public health preparedness for responding to COVID-19 is limited. This study revealed geographical differences in vulnerability to infection, case severity and likelihood of death from COVID-19 in Ethiopia. The study offers maps that can guide the targeted interventions necessary to contain the spread of COVID-19 in Ethiopia.
Location: United Kingdom of Great Britain and Northern Ireland
No related grants have been discovered for Hilary Bowman-Smart.