Equity, Diversity & Inclusion
Level 1, John Goodsell Building
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.
Scully JL, 2021, 'The Politics of Care: From Biomedical Transformation to Narrative Vulnerability', in Vulnerability and the Politics of Care, British Academy, pp. 151 - 167, http://dx.doi.org/10.5871/bacad/9780197266830.003.0010, ROS ID: 1631743
Scully JL, 2020, 'Epistemic Exclusion, Injustice, and Disability', in , Oxford University Press, pp. 295 - 309, http://dx.doi.org/10.1093/oxfordhb/9780190622879.013.8, ROS ID: 1600267
Scully JL, 2019, 'Choice, Chance, and Acceptance', in Human Flourishing in an Age of Gene Editing, Oxford University Press, pp. 143 - 156, http://dx.doi.org/10.1093/oso/9780190940362.003.0011, ROS ID: 1600266
Kim J; Scully JL; Katsanis SH, 2016, 'Ethical challenges in missing persons investigations', in Handbook of Missing Persons, pp. 163 - 175, http://dx.doi.org/10.1007/978-3-319-40199-7_12, ROS ID: 1528410
Scully JL, 2014, 'On unfamiliar moral territory: About variant embodiment, enhancement and normativity', in The Human Enhancement Debate and Disability: New Bodies for a Better Life, pp. 23 - 37, http://dx.doi.org/10.1057/9781137405531, ROS ID: 1528428
Scully JL, 2014, 'On Unfamiliar Moral Territory: About Variant Embodiment, Enhancement and Normativity', in The Human Enhancement Debate and Disability, Palgrave Macmillan UK, pp. 23 - 37, http://dx.doi.org/10.1057/9781137405531_2, ROS ID: 1600288
Scully JL, 2013, 'Disability and Vulnerability', in Vulnerability, Oxford University Press, pp. 204 - 221, http://dx.doi.org/10.1093/acprof:oso/9780199316649.003.0009, ROS ID: 1600273
Scully JL, 2013, 'Deaf identities in disability studies: With us or without us?', in Routledge Handbook of Disability Studies, pp. 109 - 121, http://dx.doi.org/10.4324/9780203144114-16, ROS ID: 1528894
Scully JL, 2013, 'The secular ethics of liberal Quakerism', in Good and Evil: Quaker Perspectives, pp. 132 - 219, ROS ID: 1528431
Dodds S, 2013, 'Feminist Bioethics', in The International Encyclopedia of Ethics, edn. 4, Blackwell Publishing Ltd, pp. 1918 - 1925, ROS ID: 809943
Scully JL, 2012, 'Disability, Human Rights and Contemporary Genetics', in , Wiley, http://dx.doi.org/10.1002/9780470015902.a0005214.pub2, ROS ID: 1600283
Scully JL, 2012, 'Disability: Stigma and Discrimination', in , Wiley, http://dx.doi.org/10.1002/9780470015902.a0005210.pub2, ROS ID: 1600285
Rehmann-Sutter C; Porz R; Scully JL, 2009, 'Sourcing human embryonic tissue: The ethical issues', in Fundamentals of Tissue Engineering and Regenerative Medicine, pp. 37 - 46, http://dx.doi.org/10.1007/978-3-540-77755-7_4, ROS ID: 1528432
Rehmann-Sutter C; Scully JL, 2009, 'Which Ethics for (of) the Nanotechnologies?', in Sociology of the Sciences Yearbook, Springer Netherlands, pp. 233 - 252, http://dx.doi.org/10.1007/978-90-481-2834-1_13, ROS ID: 1600291
Scully JL, 2008, 'Moral bodies: Epistemologies of embodiment', in Naturalized Bioethics: Toward Responsible Knowing and Practice, pp. 23 - 41, http://dx.doi.org/10.1017/CBO9781139167499.003, ROS ID: 1528434
Thompson SM, 2007, 'Introduction', in Thompson S (ed.), Planning Australia: An Overview of Urban and Regional Planning, edn. First, Cambridge University Press, Port Melbourne, pp. 1 - 8, ROS ID: 1386099
Scully JL, 2006, 'Inheritable genetic modification and disability: Normality and identity', in The Ethics of Inheritable Genetic Modification: A Dividing Line?, pp. 175 - 192, http://dx.doi.org/10.1017/CBO9780511584275.011, ROS ID: 1528436
Porz R; Scully JL; Rehmann-Sutter C, 2005, 'Fragilität oder Stabilität? Die Gendiagnostik aus Patientensicht', in Technik in einer fragilen Welt, Nomos, pp. 153 - 162, http://dx.doi.org/10.5771/9783845271071-153, ROS ID: 1600276
Otten U; Scully JL; Ehrhard PB; Gadient RA, 1994, 'Chapter 24 Neurotrophins: Signals between the nervous and immune systems', in , pp. 293 - 305, http://dx.doi.org/10.1016/S0079-6123(08)61144-9, ROS ID: 1528424
Wienroth M; Scully JL, 2021, 'Promissory ethical regimes: publics and public goods in genome editing for human health', SCIENCE AND PUBLIC POLICY, vol. 48, pp. 788 - 798, http://dx.doi.org/10.1093/scipol/scab052, ROS ID: 1651858
Strnadová I; Nevin SM; Scully JL; Palmer EE, 2021, 'The opinions and experiences of people with intellectual disability regarding genetic testing and genetic medicine: A systematic review.', Genet Med, http://dx.doi.org/10.1016/j.gim.2021.11.013, ROS ID: 1786501
Bluhm R; Gotlib A; Scully JL; Tumilty E; Milberger K, 2021, 'From the editors', International Journal of Feminist Approaches to Bioethics, vol. 14, pp. 1 - 1, http://dx.doi.org/10.3138/IJFAB-14.1.00, ROS ID: 1600262
Aquino YSJ; Rogers WA; Scully JL; Magrabi F; Carter SM, 2021, 'Ethical Guidance for Hard Decisions: A Critical Review of Early International COVID-19 ICU Triage Guidelines', Health Care Analysis, http://dx.doi.org/10.1007/s10728-021-00442-0, ROS ID: 1699566
Ahmad A; Chung R; Eckenwiler L; Ganguli-Mitra A; Hunt M; Richards R; Saghai Y; Schwartz L; Scully JL; Wild V, 2020, 'What does it mean to be made vulnerable in the era of COVID-19?', The Lancet, vol. 395, pp. 1481 - 1482, http://dx.doi.org/10.1016/S0140-6736(20)30979-X, ROS ID: 1536082
Guidry-Grimes L; Savin K; Stramondo JA; Reynolds JM; Tsaplina M; Burke TB; Ballantyne A; Kittay EF; Stahl D; Scully JL; Garland-Thomson R; Tarzian A; Dorfman D; Fins JJ, 2020, 'Disability Rights as a Necessary Framework for Crisis Standards of Care and the Future of Health Care', Hastings Center Report, vol. 50, pp. 28 - 32, http://dx.doi.org/10.1002/hast.1128, ROS ID: 1550733
Scully JL, 2019, 'Special Section: The Donchin and Holmes Emerging Scholar Prize 2016', IJFAB: International Journal of Feminist Approaches to Bioethics, vol. 12, pp. 148 - 148, http://dx.doi.org/10.3138/ijfab.12.2.08, ROS ID: 1600265
Eckenwiler L; Hunt M; Leach Scully J; Wild V, 2018, '4.11-P16Understanding and operationalizing vulnerability in International Humanitarian Health Organisations', European Journal of Public Health, vol. 28, http://dx.doi.org/10.1093/eurpub/cky048.181, ROS ID: 1528400
Scully JL, 2018, 'From "she would say that, wouldn't she?" to "does she take sugar?" epistemic injustice and disability', International Journal of Feminist Approaches to Bioethics, vol. 11, pp. 106 - 124, http://dx.doi.org/10.3138/ijfab.11.1.106, ROS ID: 1528407
Scully JL; Bluhm R; Lindemann H; Nelson JL, 2017, 'From the editors', International Journal of Feminist Approaches to Bioethics, vol. 10, pp. 1 - 3, http://dx.doi.org/10.3138/ijfab.10.2.1, ROS ID: 1528406
Scully JL; Banks S; Song R; Haq J, 2017, 'Experiences of faith group members using new reproductive and genetic technologies: A qualitative interview study', Human Fertility, vol. 20, pp. 22 - 29, http://dx.doi.org/10.1080/14647273.2016.1243816, ROS ID: 1528387
Eckenwiler L; Ahmad A; Chung R; Hunt M; Leach Scully J; Schwarz L; Wild N, 2017, 'Vulnerable Populations: Investigating Ethical Implications for Policies and Practices of International Humanitarian Organizations', Prehospital and Disaster Medicine, vol. 32, pp. S49 - S50, http://dx.doi.org/10.1017/s1049023x1700142x, ROS ID: 1528405
Verkerk MA; Lindemann H; McLaughlin J; Scully JL; Kihlbom U; Nelson J; Chin J, 2015, 'Where families and healthcare meet', Journal of Medical Ethics, vol. 41, pp. 183 - 185, http://dx.doi.org/10.1136/medethics-2013-101783, ROS ID: 1528388
Scully JL, 2014, 'Naming the dead: DNA-based identification of historical remains as an act of care', New Genetics and Society, vol. 33, pp. 313 - 332, http://dx.doi.org/10.1080/14636778.2014.946002, ROS ID: 1528395
Scully JL, 2014, 'Untitled', INTERNATIONAL JOURNAL OF FEMINIST APPROACHES TO BIOETHICS, vol. 7, pp. 1 - 2, http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000334390900001&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=891bb5ab6ba270e68a29b250adbe88d1, ROS ID: 1528900
Rommetveit K; Scully JL; Porz R, 2013, 'The role of moral imagination in patients' decision-making', Journal of Medicine and Philosophy (United Kingdom), vol. 38, pp. 160 - 172, http://dx.doi.org/10.1093/jmp/jht006, ROS ID: 1528394
Chambers T; Ahmad A; Crow S; Davis DS; Dresser R; Harter TD; Jordan SR; Kaposy C; Lanoix M; Lee KJ; Scully JLE; Taylor KA; Watson K, 2013, 'Taking bioethics personally', Narrative inquiry in bioethics, vol. 3, pp. 1 - 3, http://dx.doi.org/10.1353/nib.2013.0001, ROS ID: 1528399
Scully JL, 2013, 'Feminist disability studies, edited by Kim Q. Hall', IJFAB: International Journal of Feminist Approaches to Bioethics, vol. 6, pp. 166 - 172, http://dx.doi.org/10.3138/ijfab.6.1.166, ROS ID: 1600277
Evison M; Graham E; Haimes E; Leach Scully J; Ludwig A; Maguire C; Toom V; Williams R, 2012, 'A comment on the Hill-Turney exchange: From normative antagonism to interdisciplinary collaboration', New Genetics and Society, vol. 31, pp. 385 - 390, http://dx.doi.org/10.1080/14636778.2012.679395, ROS ID: 1528403
Rehmann-Sutter C; Porz R; Scully JL, 2012, 'How to relate the empirical to the normative: Toward a phenomenologically informed hermeneutic approach to bioethics', Cambridge Quarterly of Healthcare Ethics, vol. 21, pp. 436 - 447, http://dx.doi.org/10.1017/S0963180112000217, ROS ID: 1528404
Scully JL; Woodward R, 2012, 'Naming the unknown of Fromelles: DNA profiling, ethics and the identification of First World War bodies', Journal of War & Culture Studies, vol. 5, pp. 59 - 72, http://dx.doi.org/10.1386/jwcs.5.1.59_1, ROS ID: 1600279
Scully JL; Haimes E; Mitzkat A; Porz R; Rehmann-Sutter C, 2012, 'Donating Embryos to Stem Cell Research: The "Problem" of Gratitude', Journal of Bioethical Inquiry, vol. 9, pp. 19 - 28, http://dx.doi.org/10.1007/s11673-011-9352-9, ROS ID: 1528393
Bruscato U, 2011, 'Introduction', ARQUITETURA REVISTA, vol. 7, pp. 1 - 1, http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000297931000001&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=891bb5ab6ba270e68a29b250adbe88d1, ROS ID: 1257709
Scully JL, 2010, 'Hidden labor: Disabled/Nondisabled encounters, agency, and autonomy', IJFAB: International Journal of Feminist Approaches to Bioethics, vol. 3, pp. 25 - 42, http://dx.doi.org/10.3138/ijfab.3.2.25, ROS ID: 1600278
Porz R; Bürkli P; Barazzetti G; Scully JL; Rehmann-Sutter C, 2008, 'A challenged choice: Donating spare embryos to stem cell research in Switzerland', Swiss Medical Weekly, vol. 138, pp. 551 - 556, ROS ID: 1528435
Haimes E; Porz R; Scully J; Rehmann-Sutter C, 2008, '"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', New Genetics and Society, vol. 27, pp. 113 - 126, http://dx.doi.org/10.1080/14636770802077041, ROS ID: 1528392
Mackenzie C; Scully JL, 2007, 'Moral imagination, disability and embodiment', Journal of Applied Philosophy, vol. 24, pp. 335 - 351, http://dx.doi.org/10.1111/j.1468-5930.2007.00388.x, ROS ID: 1528391
Scully JL, 2007, 'The Troubled Dream of Genetic Medicine: Ethnicity and Innovation in Tay-Sachs, Cystic Fibrosis, and Sickle Cell Disease', Social History of Medicine, vol. 20, pp. 402 - 403, http://dx.doi.org/10.1093/shm/hkm050, ROS ID: 1600281
Scully JL; Porz R; Rehmann-Sutter C, 2007, ''You don't make genetic test decisions from one day to the next' - Using time to preserve moral space', Bioethics, vol. 21, pp. 208 - 217, http://dx.doi.org/10.1111/j.1467-8519.2007.00546.x, ROS ID: 1528390
Banks S; Scully JL; Shakespeare T, 2006, 'Ordinary ethics: Lay people's deliberations on social sex selection', New Genetics and Society, vol. 25, pp. 289 - 303, http://dx.doi.org/10.1080/14636770601032890, ROS ID: 1528418
Scully JL; Shakespeare T; Banks S, 2006, 'Gift not commodity? Lay people deliberating social sex selection', Sociology of Health and Illness, vol. 28, pp. 749 - 767, http://dx.doi.org/10.1111/j.1467-9566.2006.00540.x, ROS ID: 1528421
Scully JL; Rehmann-Sutter C, 2006, 'Creating Donors: The 2005 Swiss Law on Donation of ‘Spare’ Embryos to hESC Research', Journal of Bioethical Inquiry, vol. 3, pp. 81 - 93, http://dx.doi.org/10.1007/s11673-006-9006-5, ROS ID: 1600290
Scully JL; Banks S; Shakespeare TW, 2006, 'Chance, choice and control: Lay debate on prenatal social sex selection', Social Science and Medicine, vol. 63, pp. 21 - 31, http://dx.doi.org/10.1016/j.socscimed.2005.12.013, ROS ID: 1528389
Scully JL; Rippberger C; Rehmann-Sutter C, 2004, 'Non-professionals' evaluations of gene therapy ethics', Social Science and Medicine, vol. 58, pp. 1415 - 1425, http://dx.doi.org/10.1016/S0277-9536(03)00336-8, ROS ID: 1528417
Mouyal AV; Gurtin Z; Scully JL; Harper J, 2020, 'The infertility and fertility treatment experiences of Orthodox Jewish women in London', in HUMAN REPRODUCTION, OXFORD UNIV PRESS, ELECTR NETWORK, pp. I351 - I351, presented at 36th Virtual Annual Meeting of the European-Society-of-Human-Reproduction-and-Embryology (ESHRE), ELECTR NETWORK, 05 July 2020 - 08 July 2020, http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000552121501339&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=891bb5ab6ba270e68a29b250adbe88d1, ROS ID: 1551204
Bennett Moses L; Churches G; Zalnieriute M; Byrnes A; Scully J; Kemp K; Greenleaf G, 2020, COVIDSafe App - Submission to the Parliamentary Joint Committee on Human Rights, https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3595109, ROS ID: 1534631
Bennett Moses L; Chappell L; Churches G; Zalnieriute M; Byrnes A; Scully JL; Kemp K; Greenleaf G, 2020, Submission to Federal Attorney General, Privacy Amendment (Public Health Contact Information) Bill 2020, https://www.allenshub.unsw.edu.au/sites/default/files/inline-files/UNSW%20Submission%20to%20AG%20Porter%20re%20COVIDSafe.pdf, ROS ID: 1573595
Bennett Moses L; Churches G; Zalnieriute M; Byrnes A; Scully J; Kemp K; Greenleaf G, 2020, Submission to Senate Select Committee on COVID-19 re Privacy Amendment (Public Health Contact Information) Bill 2020, https://unsw.sharepoint.com/:b:/s/LawResearchSupport/ETsj6l0D8oBKhaCitN3nhssBB1QHxQsaXLMp9_9rXmF9vQ?e=46zOJ3, ROS ID: 1577340
Bennett Moses L; Churches G; Zalnieriute M; Byrnes AC; Scully JL; Kemp K; Greenleaf G, COVIDSafe App - Submission to the Parliamentary Joint Committee on Human Rights, http://dx.doi.org/10.2139/ssrn.3595109, ROS ID: 1668887
Dodds S; Ells C; Garry A; Holmes HB; Purdy L; Rawlinson MC; Scully JL; Tong R, 2015, In tribute to Anne Donchin (1930–2014), University of Toronto Press, ROS ID: 809966
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.
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.