Bioethics (ethical and social aspects of biomedical advances), especially in areas such as new reproductive technologies, prenatal selection and screening, genomic medicine including personalized medicine and genome editing
Ethics of humanitarian responses in disasters and global health emergencies, especially impact on people with disabilities
Commentary on technology and disability; deafness and Deaf culture
Fields of Research (FoR)Bioethics (human and animal), Special Education and Disability
Jackie Leach Scully is an internationally recognised bioethicist specialising in disability and feminist bioethics. With a background in molecular biology and further training in neurobiology, she held research fellowships at the Ecole polytechnique federale de Lausanne and the University of Basel, Switzerland, before helping to establish the first interdisciplinary unit for bioethics at Basel. In 2006 she joined Newcastle University, UK as...view more
Jackie Leach Scully is an internationally recognised bioethicist specialising in disability and feminist bioethics. With a background in molecular biology and further training in neurobiology, she held research fellowships at the Ecole polytechnique federale de Lausanne and the University of Basel, Switzerland, before helping to establish the first interdisciplinary unit for bioethics at Basel. In 2006 she joined Newcastle University, UK as Senior Lecturer, becoming Director of Research and ultimately Executive Director of the Policy, Ethics and Life Sciences Research Centre there. In August 2019 she moved to UNSW as Professor of Bioethics and Director of the Disability Innovation Institute, based in the Faculty of Arts and Social Sciences.
Reproductive autonomy in the genomic age. Co-applicant with Professor Ainsley Newson, Dr Rosalind McDougall, Dr Kathryn MacKay, A/Prof Jan Hodgson, Professor Brenda Wilson. Australian Research Council, AUD279,363 (2020)
I am a Chief Investigator in TARGeT, a project investigating ideas of reproductive autonomy in an age of genomic testing. The project, funded by the Australian Research Council, aims to provide a better way to help people to think and reflect about new forms of genetic testing in pregnancy. These tests are on the rise, and yet are occurring in a setting that many see as highly individualistic and problematic in terms of the increased levels of information and choice. The project’s interdisciplinary team will aim use empirical data to generate new theoretical and practical knowledge, to re-frame the concept of 'reproductive autonomy' for these settings. Expected outcomes include new bioethics knowledge, innovations in research methodologies, new data, and recommendations for practice. The project will provide the first analysis of how our ideas about autonomy in the reproductive setting need to change, to ensure that new tests in pregnancy are offered and used well.
Vulnerability and justice in global health emergency regulation: developing future ethical models. Co-applicant with principal applicant Dr Agomoni Ganguli Mitra. Wellcome Trust Seed Award in Humanities and Social Science, GBP 66,000 (2018).
Faithful judgements in reflection and discernment. Principal applicant with 1 co-applicant. ESRC North East Impact Acceleration Account, GBP 8,150 (2017-2018)
Faithful judgements in policy and practice. Principal applicant with 2 co-applicants. ESRC North East Impact Acceleration Account, GBP 8,810 (2015-2016)
Technologies of identification and responses to mass death: a PEALS symposium on the social and ethical aspects of DVI. Principal applicant with 2 co-applicants. Wellcome Trust Small Grant, GBP 4,250 (2014).
Practices of responsibility in change. Co-applicant as part of international consortium. Netherlands Organisation for Scientific Research, EUR 50,120 (2014-2017).
Faithful judgements: the role of religion in lay people’s ethical evaluations of new reproductive and genetic technologies. Principal investigator, with 2 co-investigators, 1 research associate. Economic and Social Research Council grant RES-062-23-3210, GBP 252,438 (2011-2014).
Naming the dead: social, ethical, legal and political issues of disaster victim identification by DNA. Development of international research network leading to Brocher Foundation workshop held 4-7 December 2012, Geneva. Brocher Foundation funding to cover workshop expenses, value approx. GBP 11,000.
Parenthood and non-parenthood in an age of assisted conception. British Academy Small Grant, GBP 7,500 (2009-2011). With Dr Stephanie Lawler.
Ethical decisions about the fate of embryos: the views and approaches of couples undergoing IVF. Swiss National Science Foundation grant 1115-65990, EUR 233,917 (2005-2008). Principal investigator, one research associate.
Ordinary ethics: moral evaluation of the new genetics by non-professionals. Wellcome Trust grant 068439/Z/02/Z, EUR 114,088 (2002-2005).
Time as a contextual element in ethical decision-making in the field of genetic diagnostics. Swiss National Science Foundation grant 1114-64956.01, EUR 206,140 (2002-2005). Principal investigator, one PhD student.
Perceptions of healing needs: somatic gene therapy, disability and identity. Swiss National Research Priority Programme Project 37, grant 4037-53073, EUR 84,095 (1998-2001). Second investigator, one research associate.
Ethical and theological issues in genetic manipulation. Rowntree Charitable Trust Fellowship, EUR 38,705 (1995-1997).
Earlier research projects were in the fields of molecular neurodegeneration and oncogenesis.
PhD in cellular pathology, University of Cambridge; BA (Hons) in biochemistry, University of Oxford; MA in psychoanalytic studies, Sheffield University
Fellow of the Academy of Social Sciences (UK)
Fellow of the Royal Society of Arts (UK)
My Research Activities
My overarching bioethical interest is in the formation of moral understandings, and particularly how personal and social identities shape and reflect moral understandings and responses. Part of the ‘sociological move’ within bioethics, this work also reflects a longstanding interest in the experiences of socially marginalised groups in healthcare and life sciences.These areas have been pursued through substantive projects addressing the ethics of assisted reproductive technologies; prenatal diagnosis and selection; genomic medicine; neuroethics, including neuroprostheses and brain-computer interfaces; artificial intelligence and robotics; and organ transplantation.
Throughout this research I've had an ongoing interest in the body, and the place of ‘normal’ and ‘anomalous’(or disabled) embodiment in social and moral life, as well as the effect of biomedical and biotechnological innovations on the relationship between the body and identity. A substantial part of this area of my work focuses on bioethics' engagement with disability, which I wrote about in Disability Bioethics: Moral Bodies, Moral Difference (2008) and a number of other papers since. Work on the body has also considered a very different kind of embodiment in several papers on the socioethics of recovering and identifying human remains, in contemporary and historical contexts. Most recently I have collaborated in an interdisciplinary, international project on justice and vulnerability in global health emergencies, funded by the Wellcome Trust, examining how disability is treated in humanitarian responses.
Much of my work uses or is based on empirical methodologies, and I have contributed to the ongoing discussion within bioethics about the use of empirical knowledge in normative theory.
The social focus of much of my research has also led to significant involvement in public engagement in healthcare evaluation and policy making, both practically and in terms of investigating how (if) public engagement works, and how it might be made more effective.
My Research Supervision
Areas of supervision
Bioethics, especially of reproductive and genomic technologies
Empirical and qualitative approaches to bioethics
Public health ethics, especially disasters and global health emergencies, including humanitarian responses and disaster victim identification
Public bioethics, including public engagement and deliberative methodologies
Disability studies in general; Deaf studies.
Lucinda Freeman, Exploring stakeholder attitudes toward reproductive carrier screening for inherited non-syndromic deafness
Co-supervising with Professor Edwin Kirk (School of Children's and Women's Health, UNSW) and Professor Martin Delatycki (Murdoch Children's Institute)
Reproductive carrier screening is a relatively new form of genetic testing which identifies couples who have an increased chance of having a child with certain genetic conditions. Couples who are found to have an increased chance can then consider whether they would use this information in their reproductive decision making. This screening is generally thought to be acceptable for serious early onset genetic conditions, but there are many genetic conditions that are considered less serious but could potentially be included in screening, so couples could screen for these ‘milder’ genetic conditions in the same way. These include genetic forms of deafness.
Lucinda is using a mixed methods approach to explore the views on genetic testing for deafness of those with a lived experience of hearing loss, healthcare providers who will be involved with facilitating reproductive carrier screening in the future, and members of the public who have had reproductive carrier screening through a research study called Mackenzie’s Mission. This important study is an opportunity to document the different perspectives and explore whether or not deafness is a genetic condition that fits the framework of a population wide reproductive carrier screening program.
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