Jackie Leach Scully
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View article: Problems With a One-Size-Fits-All Approach: A Systematic Literature Review on Solutions to AI Bias in Engineering Biology
Problems With a One-Size-Fits-All Approach: A Systematic Literature Review on Solutions to AI Bias in Engineering Biology Open
Much of the current literature on artificial intelligence bias in healthcare presents a one-size-fits-all approach to bias mitigation. Such approaches, however, are unlikely to offer actionable guidance to those developers (and their insti…
View article: UN special rapporteur’s report on surrogacy encourages us to ask difficult questions
UN special rapporteur’s report on surrogacy encourages us to ask difficult questions Open
View article: “All doctors should be trained in that”: The co-production and mixed-methods evaluation of an educational toolkit to enable safe, high-quality genetic health care for people with intellectual disability
“All doctors should be trained in that”: The co-production and mixed-methods evaluation of an educational toolkit to enable safe, high-quality genetic health care for people with intellectual disability Open
View article: Translating epigenetics into antenatal care in Australia: communicating risk and intergenerational health in practice
Translating epigenetics into antenatal care in Australia: communicating risk and intergenerational health in practice Open
View article: Developing genetic literacy in high school students with intellectual disability: Teachers’ experiences and perspectives
Developing genetic literacy in high school students with intellectual disability: Teachers’ experiences and perspectives Open
View article: Automating Misrecognition: The Case of Disability
Automating Misrecognition: The Case of Disability Open
Over the last decade, bioethics has begun to address the ethical issues emerging as artificial intelligence (AI) and associated technological processes such as automated decision-making (ADM) become part of healthcare and research. Recent …
View article: “This robot is dictating her next steps in life”: disability justice and relational AI ethics
“This robot is dictating her next steps in life”: disability justice and relational AI ethics Open
View article: “All doctors should be trained in that”: The coproduction and mixed-methods evaluation of an educational toolkit to enable safe, high-quality genetic health care for people with intellectual disability
“All doctors should be trained in that”: The coproduction and mixed-methods evaluation of an educational toolkit to enable safe, high-quality genetic health care for people with intellectual disability Open
Coproduction can be successfully applied to improve the engagement of people with intellectual disability, potentially reducing health inequity and improving the safety and quality of genetic health care.
View article: “It was up to me to be curious”: Perceptions and Experiences of Students with Intellectual Disability on Genetics and Health Education
“It was up to me to be curious”: Perceptions and Experiences of Students with Intellectual Disability on Genetics and Health Education Open
People with intellectual disability want to learn more about their health and genetics. They want to be empowered with the knowledge and skills to make informed health and genetic healthcare choices. Little is known about what high school …
View article: Getting it wrong on disability rights
Getting it wrong on disability rights Open
View article: The salience of genomic information to reproductive autonomy: Australian healthcare professionals’ views on a changing prenatal testing landscape
The salience of genomic information to reproductive autonomy: Australian healthcare professionals’ views on a changing prenatal testing landscape Open
Genomic testing in prenatal care is rapidly advancing and it is now possible to obtain an entire fetal genome via a blood test administered in early pregnancy. In the pursuit of reproductive autonomy, more tests are being offered to more p…
View article: The need for co-educators to drive a new model of inclusive, person-centred and respectful co-healthcare with people with intellectual disability
The need for co-educators to drive a new model of inclusive, person-centred and respectful co-healthcare with people with intellectual disability Open
The need for co-educators to drive a new model of inclusive, person-centred and respectful co-healthcare with people with intellectual disability
View article: Equitable and accessible informed healthcare consent process for people with intellectual disability: a systematic literature review
Equitable and accessible informed healthcare consent process for people with intellectual disability: a systematic literature review Open
Objective To identify factors acting as barriers or enablers to the process of healthcare consent for people with intellectual disability and to understand how to make this process equitable and accessible. Data sources Databases: Embase, …
View article: Should genes for non‐syndromic hearing loss be included in reproductive genetic carrier screening: Views of people with a personal or family experience of deafness
Should genes for non‐syndromic hearing loss be included in reproductive genetic carrier screening: Views of people with a personal or family experience of deafness Open
Many commercial reproductive genetic carrier screening (RGCS) panels include genes associated with non‐syndromic hearing loss (NSHL), however little is known about the general acceptability of their inclusion. Although some couples wish to…
View article: Unveiling algorithmic power: exploring the impact of automated systems on disabled people’s engagement with social services
Unveiling algorithmic power: exploring the impact of automated systems on disabled people’s engagement with social services Open
This article examines the impact of algorithmic systems on disabled people’s interactions with social services, focusing on a case study of algorithmic decision-making in Australia’s National Disability Insurance Scheme (NDIS). Through int…
View article: COVID, Vulnerability, and the Death of Solidarity: “Who Do We Not Save?”
COVID, Vulnerability, and the Death of Solidarity: “Who Do We Not Save?” Open
View article: Exploring the Barriers and Enablers for the Equitable and Accessible Informed Healthcare Consent Process for People with Intellectual Disability: A Systematic Literature Review
Exploring the Barriers and Enablers for the Equitable and Accessible Informed Healthcare Consent Process for People with Intellectual Disability: A Systematic Literature Review Open
Objective To identify the factors that act as barriers to, or enablers of, proper informed consent for healthcare interventions for people with intellectual disability. Design Systematic literature review. No funding sources or conflicts o…
View article: The ethical minefield of screening for disabilities
The ethical minefield of screening for disabilities Open
With prenatal genetic screening now routine, it’s relevant to ask whether prospective parents or scientists understand enough about the results. In the first half of her pregnancy, a woman in most developed countries will be offered prenat…
View article: Views of healthcare professionals on the inclusion of genes associated with non-syndromic hearing loss in reproductive genetic carrier screening
Views of healthcare professionals on the inclusion of genes associated with non-syndromic hearing loss in reproductive genetic carrier screening Open
Genes associated with non-syndromic hearing loss (NSHL) are frequently included in panels for reproductive genetic carrier screening (RGCS), despite a lack of consensus on whether NSHL is a condition appropriate for inclusion in RGCS. We c…
View article: “I am not a number!” Opinions and preferences of people with intellectual disability about genetic healthcare
“I am not a number!” Opinions and preferences of people with intellectual disability about genetic healthcare Open
View article: Views of reproductive genetic carrier screening participants regarding screening for genes associated with non‐syndromic hearing loss
Views of reproductive genetic carrier screening participants regarding screening for genes associated with non‐syndromic hearing loss Open
Objective Reproductive genetic carrier screening (RGCS) panels often include genes associated with non‐syndromic hearing loss (NSHL) despite a lack of evidence of acceptability. Although some couples take steps to avoid having a child who …
View article: “I am not a number!” Opinions and preferences of people with intellectual disability about genomic healthcare.
“I am not a number!” Opinions and preferences of people with intellectual disability about genomic healthcare. Open
There is limited research exploring the knowledge and experiences of genomic healthcare from the perspective of people with intellectual disability. This study, conducted in New South Wales (Australia), addresses this gap. Eighteen adults …
View article: Views of healthcare professionals on the inclusion of genes associated with non-syndromic hearing loss in reproductive genetic carrier screening
Views of healthcare professionals on the inclusion of genes associated with non-syndromic hearing loss in reproductive genetic carrier screening Open
Genes associated with non-syndromic hearing loss (NSHL) are frequently included in panels for reproductive genetic carrier screening (RGCS), despite a lack of consensus on whether NSHL is a condition appropriate for inclusion in RGCS. We c…
View article: The Routledge Handbook of Feminist Bioethics
The Routledge Handbook of Feminist Bioethics Open
The Routledge Handbook of Feminist Bioethics is an outstanding resource for anyone with an interest in feminist bioethics, with chapters covering topics from justice and power to the climate crisis. Comprising forty-two chapters by emergin…
View article: The involvement of rare disease patient organisations in therapeutic innovation across rare paediatric neurological conditions: a narrative review
The involvement of rare disease patient organisations in therapeutic innovation across rare paediatric neurological conditions: a narrative review Open
View article: Table of Contents
Table of Contents Open
View article: Estimating the potential for global dissemination of pandemic pathogens using the global airline network and healthcare development indices
Estimating the potential for global dissemination of pandemic pathogens using the global airline network and healthcare development indices Open
View article: The opinions and experiences of people with intellectual disability regarding genetic testing and genetic medicine: A systematic review
The opinions and experiences of people with intellectual disability regarding genetic testing and genetic medicine: A systematic review Open
View article: Ethical Guidance for Hard Decisions: A Critical Review of Early International COVID-19 ICU Triage Guidelines
Ethical Guidance for Hard Decisions: A Critical Review of Early International COVID-19 ICU Triage Guidelines Open
View article: Promissory ethical regimes: publics and public goods in genome editing for human health
Promissory ethical regimes: publics and public goods in genome editing for human health Open
This paper analyses promissory discourse for genome editing and human health in the UK, attending to the articulation of public goods and their beneficiary publics. Focusing on promissory reasoning about an emerging technology field as ant…