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Professor Jackie Leach Scully

Professor Jackie Leach Scully

Director
PhD in cellular pathology, University of Cambridge; BA (Hons) in biochemistry, University of Oxford; MA in psychoanalytic studies, Sheffield University
Arts, Design & Architecture
School of Social Sciences

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 ÁñÁ«¹ÙÍø as Professor of Bioethics and Director of the Disability Innovation Institute, based in the Faculty of Arts and Social Sciences.
Location

Equity, Diversity & Inclusion
Research hub,
Level 1, John Goodsell Building

Email

jackie.leach.scully@unsw.edu.au

  • Scully JL,Ìý2016,ÌýGood and Evil,Ìý¸é´Ç³Ü³Ù±ô±ð»å²µ±ð,Ìý, ROS ID:Ìý

    Scully JL; Dandelion P,Ìý2013,ÌýGood and evil: Quaker perspectives, ROS ID:Ìý

  • Scully JL, 2021, 'The Politics of Care: From Biomedical Transformation to Narrative Vulnerability', inÌýVulnerability and the Politics of Care, British Academy, pp. 151 - 167,Ìý, ROS ID:Ìý

    Scully JL, 2020, '14 Nothing Like a Gene', inÌýGenes in Development, Duke University Press, pp. 349 - 364,Ìý, ROS ID:Ìý

    Scully JL, 2020, 'Epistemic Exclusion, Injustice, and Disability', inÌý, Oxford University Press, pp. 295 - 309,Ìý, ROS ID:Ìý

    Scully JL, 2019, 'Deaf identities in disability studies', inÌýRoutledge Handbook of Disability Studies, Routledge, pp. 145 - 157,Ìý, ROS ID:Ìý

    Scully JL, 2019, 'Choice, Chance, and Acceptance', inÌýHuman Flourishing in an Age of Gene Editing, Oxford University Press, pp. 143 - 156,Ìý, ROS ID:Ìý

    Scully JL, 2018, 'Disability and the challenge of genomics', inÌýRoutledge Handbook of Genomics, Health and Society, pp. 186 - 194,Ìý, ROS ID:Ìý

    Scully JL, 2016, 'Feminist empirical bioethics', inÌýEmpirical Bioethics: Theoretical and Practical Perspectives, pp. 195 - 221,Ìý, ROS ID:Ìý

    Kim J; Scully JL; Katsanis SH, 2016, 'Ethical challenges in missing persons investigations', inÌýHandbook of Missing Persons, pp. 163 - 175,Ìý, ROS ID:Ìý

    Scully JL, 2014, 'On unfamiliar moral territory: About variant embodiment, enhancement and normativity', inÌýThe Human Enhancement Debate and Disability: New Bodies for a Better Life, pp. 23 - 37,Ìý, ROS ID:Ìý

    Scully JL, 2014, 'On Unfamiliar Moral Territory: About Variant Embodiment, Enhancement and Normativity', inÌýThe Human Enhancement Debate and Disability, Palgrave Macmillan UK, pp. 23 - 37,Ìý, ROS ID:Ìý

    Scully JL, 2013, 'Disability and Vulnerability', inÌýVulnerability, Oxford University Press, pp. 204 - 221,Ìý, ROS ID:Ìý

    Scully JL, 2013, 'Deaf identities in disability studies: With us or without us?', inÌýRoutledge Handbook of Disability Studies, pp. 109 - 121,Ìý, ROS ID:Ìý

    Scully JL, 2013, 'The secular ethics of liberal Quakerism', inÌýGood and Evil: Quaker Perspectives, pp. 132 - 219, ROS ID:Ìý

    Dodds S, 2013, 'Feminist Bioethics', inÌýThe International Encyclopedia of Ethics, edn. 4, Blackwell Publishing Ltd, pp. 1918 - 1925, ROS ID:Ìý

    Scully JL, 2012, 'Disability, Human Rights and Contemporary Genetics', inÌý, Wiley,Ìý, ROS ID:Ìý

    Scully JL, 2012, 'Disability: Stigma and Discrimination', inÌý, Wiley,Ìý, ROS ID:Ìý

    Scully JL, 2012, 'Disability and the thinking body', inÌýEmbodied Selves, pp. 139 - 159,Ìý, ROS ID:Ìý

    Scully JL, 2011, 'Disability and the Pitfalls of Recognition', inÌýContesting Recognition, Palgrave Macmillan UK, pp. 36 - 52,Ìý, ROS ID:Ìý

    Rehmann-Sutter C; Porz R; Scully JL, 2009, 'Sourcing human embryonic tissue: The ethical issues', inÌýFundamentals of Tissue Engineering and Regenerative Medicine, pp. 37 - 46,Ìý, ROS ID:Ìý

    Rehmann-Sutter C; Scully JL, 2009, 'Which Ethics for (of) the Nanotechnologies?', inÌýSociology of the Sciences Yearbook, Springer Netherlands, pp. 233 - 252,Ìý, ROS ID:Ìý

    Scully JL, 2008, 'Disability and the thinking body', inÌýArguing about Disability: Philosophical Perspectives, pp. 57 - 73,Ìý, ROS ID:Ìý

    Scully JL, 2008, 'Moral bodies: Epistemologies of embodiment', inÌýNaturalized Bioethics: Toward Responsible Knowing and Practice, pp. 23 - 41,Ìý, ROS ID:Ìý

    Thompson SM, 2007, 'Introduction', in Thompson S (ed.),ÌýPlanning Australia: An Overview of Urban and Regional Planning, edn. First, Cambridge University Press, Port Melbourne, pp. 1 - 8, ROS ID:Ìý

    Scully JL, 2006, 'Disability: Stigma and Discrimination', inÌý, Wiley,Ìý, ROS ID:Ìý

    Scully JL, 2006, 'Inheritable genetic modification and disability: Normality and identity', inÌýThe Ethics of Inheritable Genetic Modification: A Dividing Line?, pp. 175 - 192,Ìý, ROS ID:Ìý

    SCULLY JL, 2006, 'DISABLED EMBODIMENT AND AN ETHIC OF CARE', inÌýBioethics in Cultural Contexts, Springer Netherlands, pp. 247 - 261,Ìý, ROS ID:Ìý

    Scully JL, 2006, 'Nothing Like a Gene', inÌýGenes in Development, Duke University Press, pp. 349 - 364,Ìý, ROS ID:Ìý

    Porz R; Scully JL; Rehmann-Sutter C, 2005, 'Fragilität oder Stabilität? Die Gendiagnostik aus Patientensicht', inÌýTechnik in einer fragilen Welt, Nomos, pp. 153 - 162,Ìý, ROS ID:Ìý

    Otten U; Scully JL; Ehrhard PB; Gadient RA, 1994, 'Chapter 24 Neurotrophins: Signals between the nervous and immune systems', inÌý, pp. 293 - 305,Ìý, ROS ID:Ìý

    Scully JL, 'Deaf Identities in Disability Studies', inÌýRoutledge Handbook of Disability Studies, Routledge,Ìý, ROS ID:Ìý

    Scully JL, 'Disability and the Pitfalls of Recognition', inÌýContesting Recognition, Palgrave Macmillan,Ìý, ROS ID:Ìý

    Scully JL, 'On Unfamiliar Moral Territory', inÌýThe Human Enhancement Debate and Disability, Palgrave Macmillan,Ìý, ROS ID:Ìý

  • Wienroth M; Scully JL, 2021, 'Promissory ethical regimes: publics and public goods in genome editing for human health',ÌýSCIENCE AND PUBLIC POLICY, vol. 48, pp. 788 - 798,Ìý, ROS ID:Ìý

    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.',ÌýGenet Med,Ìý, ROS ID:Ìý

    Rogers WA; Scully JL, 2021, 'Activism and Bioethics: Taking a Stand on Things That Matter',ÌýHastings Center Report, vol. 51, pp. 32 - 33,Ìý, ROS ID:Ìý

    Scully JL, 2021, 'A biographer and a bioethicist take on the CRISPR revolution',ÌýNature, vol. 591, pp. 196 - 197,Ìý, ROS ID:Ìý

    Bluhm R; Gotlib A; Scully JL; Tumilty E; Milberger K, 2021, 'From the editors',ÌýInternational Journal of Feminist Approaches to Bioethics, vol. 14, pp. 1 - 1,Ìý, ROS ID:Ìý

    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',ÌýHealth Care Analysis,Ìý, ROS ID:Ìý

    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?',ÌýThe Lancet, vol. 395, pp. 1481 - 1482,Ìý, ROS ID:Ìý

    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',ÌýHastings Center Report, vol. 50, pp. 28 - 32,Ìý, ROS ID:Ìý

    Scully JL, 2020, 'Disability, Disablism, and COVID-19 Pandemic Triage',ÌýJournal of Bioethical Inquiry,Ìý, ROS ID:Ìý

    Draper H; Moorlock G; Rogers W; Scully JL, 2019, 'Bioethics and activism',ÌýBioethics, vol. 33, pp. 853 - 856,Ìý, ROS ID:Ìý

    Scully JL, 2019, 'The responsibilities of the engaged bioethicist: Scholar, advocate, activist',ÌýBioethics, vol. 33, pp. 872 - 880,Ìý, ROS ID:Ìý

    Scully JL, 2019, 'Special Section: The Donchin and Holmes Emerging Scholar Prize 2016',ÌýIJFAB: International Journal of Feminist Approaches to Bioethics, vol. 12, pp. 148 - 148,Ìý, ROS ID:Ìý

    Eckenwiler L; Hunt M; Leach Scully J; Wild V, 2018, '4.11-P16Understanding and operationalizing vulnerability in International Humanitarian Health Organisations',ÌýEuropean Journal of Public Health, vol. 28,Ìý, ROS ID:Ìý

    Scully JL, 2018, 'From "she would say that, wouldn't she?" to "does she take sugar?" epistemic injustice and disability',ÌýInternational Journal of Feminist Approaches to Bioethics, vol. 11, pp. 106 - 124,Ìý, ROS ID:Ìý

    Scully JL; Bluhm R; Lindemann H; Nelson JL, 2017, 'From the editors',ÌýInternational Journal of Feminist Approaches to Bioethics, vol. 10, pp. 1 - 3,Ìý, ROS ID:Ìý

    Scully JL; Banks S; Song R; Haq J, 2017, 'Experiences of faith group members using new reproductive and genetic technologies: A qualitative interview study',ÌýHuman Fertility, vol. 20, pp. 22 - 29,Ìý, ROS ID:Ìý

    Scully JL, 2017, 'A mitochondrial story: Mitochondrial replacement, identity and narrative',ÌýBioethics, vol. 31, pp. 37 - 45,Ìý, ROS ID:Ìý

    Scully JL, 2017, 'Genetic interventions to ‘have healthier children’: a viewpoint from the United Kingdom',ÌýBioethica Forum,Ìý, ROS ID:Ìý

    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',ÌýPrehospital and Disaster Medicine, vol. 32, pp. S49 - S50,Ìý, ROS ID:Ìý

    Verkerk MA; Lindemann H; McLaughlin J; Scully JL; Kihlbom U; Nelson J; Chin J, 2015, 'Where families and healthcare meet',ÌýJournal of Medical Ethics, vol. 41, pp. 183 - 185,Ìý, ROS ID:Ìý

    Scully JL; Williams R, 2014, 'Approaching disaster victim identification',ÌýNew Genetics and Society, vol. 33, pp. 233 - 238,Ìý, ROS ID:Ìý

    Scully JL, 2014, 'Naming the dead: DNA-based identification of historical remains as an act of care',ÌýNew Genetics and Society, vol. 33, pp. 313 - 332,Ìý, ROS ID:Ìý

    Scully JL, 2014, 'Untitled',ÌýINTERNATIONAL JOURNAL OF FEMINIST APPROACHES TO BIOETHICS, vol. 7, pp. 1 - 2,Ìý, ROS ID:Ìý

    Rommetveit K; Scully JL; Porz R, 2013, 'The role of moral imagination in patients' decision-making',ÌýJournal of Medicine and Philosophy (United Kingdom), vol. 38, pp. 160 - 172,Ìý, ROS ID:Ìý

    Scully JLE, 2013, 'Body alienation and the moral sense of self',ÌýNarrative inquiry in bioethics, vol. 3, pp. 26 - 28,Ìý, ROS ID:Ìý

    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',ÌýNarrative inquiry in bioethics, vol. 3, pp. 1 - 3,Ìý, ROS ID:Ìý

    Scully JL, 2013, 'Feminist disability studies, edited by Kim Q. Hall',ÌýIJFAB: International Journal of Feminist Approaches to Bioethics, vol. 6, pp. 166 - 172,Ìý, ROS ID:Ìý

    Scully JL, 2013, 'Mitochondrial donation: the slippery slope to genetic engineering?',ÌýBioethica Forum,Ìý, ROS ID:Ìý

    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',ÌýNew Genetics and Society, vol. 31, pp. 385 - 390,Ìý, ROS ID:Ìý

    Rehmann-Sutter C; Porz R; Scully JL, 2012, 'How to relate the empirical to the normative: Toward a phenomenologically informed hermeneutic approach to bioethics',ÌýCambridge Quarterly of Healthcare Ethics, vol. 21, pp. 436 - 447,Ìý, ROS ID:Ìý

    Scully JL; Woodward R, 2012, 'Naming the unknown of Fromelles: DNA profiling, ethics and the identification of First World War bodies',ÌýJournal of War & Culture Studies, vol. 5, pp. 59 - 72,Ìý, ROS ID:Ìý

    Scully JL; Haimes E; Mitzkat A; Porz R; Rehmann-Sutter C, 2012, 'Donating Embryos to Stem Cell Research: The "Problem" of Gratitude',ÌýJournal of Bioethical Inquiry, vol. 9, pp. 19 - 28,Ìý, ROS ID:Ìý

    Scully JL, 2011, ''Choosing disability', symbolic law, and the media',ÌýMedical Law International, vol. 11, pp. 197 - 211,Ìý, ROS ID:Ìý

    Bruscato U, 2011, 'Introduction',ÌýARQUITETURA REVISTA, vol. 7, pp. 1 - 1,Ìý, ROS ID:Ìý

    Scully JL, 2010, 'Hidden labor: Disabled/Nondisabled encounters, agency, and autonomy',ÌýIJFAB: International Journal of Feminist Approaches to Bioethics, vol. 3, pp. 25 - 42,Ìý, ROS ID:Ìý

    Scully JL, 2009, 'Virtuous Friends: Morality and Quaker Identity',ÌýQuaker Studies, vol. 14, pp. 108 - 122,Ìý, ROS ID:Ìý

    Scully JL, 2008, 'Disability and genetics in the era of genomic medicine',ÌýNature Reviews Genetics, vol. 9, pp. 797 - 802,Ìý, ROS ID:Ìý

    Porz R; Bürkli P; Barazzetti G; Scully JL; Rehmann-Sutter C, 2008, 'A challenged choice: Donating spare embryos to stem cell research in Switzerland',ÌýSwiss Medical Weekly, vol. 138, pp. 551 - 556, ROS ID:Ìý

    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',ÌýNew Genetics and Society, vol. 27, pp. 113 - 126,Ìý, ROS ID:Ìý

    Mackenzie C; Scully JL, 2007, 'Moral imagination, disability and embodiment',ÌýJournal of Applied Philosophy, vol. 24, pp. 335 - 351,Ìý, ROS ID:Ìý

    Scully JL, 2007, 'The Troubled Dream of Genetic Medicine: Ethnicity and Innovation in Tay-Sachs, Cystic Fibrosis, and Sickle Cell Disease',ÌýSocial History of Medicine, vol. 20, pp. 402 - 403,Ìý, ROS ID:Ìý

    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',ÌýBioethics, vol. 21, pp. 208 - 217,Ìý, ROS ID:Ìý

    Scully JL, 2007, 'Moral understandings: A feminist study in ethics',ÌýBioSocieties, vol. 2, pp. 277 - 278,Ìý, ROS ID:Ìý

    Banks S; Scully JL; Shakespeare T, 2006, 'Ordinary ethics: Lay people's deliberations on social sex selection',ÌýNew Genetics and Society, vol. 25, pp. 289 - 303,Ìý, ROS ID:Ìý

    Scully JL; Shakespeare T; Banks S, 2006, 'Gift not commodity? Lay people deliberating social sex selection',ÌýSociology of Health and Illness, vol. 28, pp. 749 - 767,Ìý, ROS ID:Ìý

    Scully JL; Rehmann-Sutter C, 2006, 'Creating Donors: The 2005 Swiss Law on Donation of ‘Spare’ Embryos to hESC Research',ÌýJournal of Bioethical Inquiry, vol. 3, pp. 81 - 93,Ìý, ROS ID:Ìý

    Scully JL; Banks S; Shakespeare TW, 2006, 'Chance, choice and control: Lay debate on prenatal social sex selection',ÌýSocial Science and Medicine, vol. 63, pp. 21 - 31,Ìý, ROS ID:Ìý

    2004, 'Research Ethics',ÌýJAMA, vol. 292, pp. 3032 - 3032,Ìý, ROS ID:Ìý

    Scully JL, 2004, 'What is a disease?',ÌýEMBO Reports, vol. 5, pp. 650 - 653,Ìý, ROS ID:Ìý

    Scully JL; Rippberger C; Rehmann-Sutter C, 2004, 'Non-professionals' evaluations of gene therapy ethics',ÌýSocial Science and Medicine, vol. 58, pp. 1415 - 1425,Ìý, ROS ID:Ìý

  • Mouyal AV; Gurtin Z; Scully JL; Harper J, 2020, 'The infertility and fertility treatment experiences of Orthodox Jewish women in London', inÌýHUMAN 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,Ìý, ROS ID:Ìý

  • 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,Ìý, ROS ID:Ìý

  • 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,Ìý, ROS ID:Ìý

    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,Ìý, ROS ID:Ìý

  • 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,Ìý, ROS ID:Ìý

    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:

  • Fellow of the Academy of Social Sciences (UK)
  • Fellow of the Royal Society of Arts (UK)

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,Ìýaims to provide a better way to help people to think and reflect about new forms of genetic testing in pregnancy.ÌýThese 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 teamÌýwill aim use empirical data to generate new theoretical and practical knowledge, to re-frame the concept of 'reproductive autonomy' for these settings. ExpectedÌýoutcomes 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.

/

Ìý

Vulnerability and justice in global health emergency regulation: developing future ethical models.ÌýCo-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.ÌýPrincipal 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.ÌýPrincipal applicant with 2 co-applicants.ÌýWellcome Trust Small Grant, GBPÌý4,250 (2014).

Practices of responsibility in change.ÌýCo-applicant as part of international consortium. Netherlands Organisation for Scientific Research, EURÌý50,120 (2014-2017).

Faithful judgements: the role of religion in lay people’s ethical evaluations of new reproductive and genetic technologies.ÌýPrincipal investigator, with 2 co-investigators, 1 research associate.ÌýEconomic and Social Research Council grantÌýRES-062-23-3210, GBPÌý252,438 (2011-2014).

Naming the dead: social, ethical, legal and political issues of disaster victim identification by DNA.ÌýDevelopment of international research network leading to Brocher Foundation workshop held 4-7 December 2012, Geneva. Brocher Foundation funding to cover workshop expenses, value approx. GBPÌý11,000.

Parenthood and non-parenthood in an age of assisted conception. British Academy Small Grant, GBPÌý7,500 (2009-2011). With Dr Stephanie Lawler.

Ethical decisions about the fate of embryos: the views and approaches of couples undergoing IVF.ÌýSwiss National Science Foundation grant 1115-65990, EURÌý233,917 (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, EURÌý114,088 (2002-2005).

Time as a contextual element in ethical decision-making in the field of genetic diagnostics.ÌýSwiss National Science Foundation grant 1114-64956.01, EURÌý206,140 (2002-2005). Principal investigator, one PhD student.

Perceptions of healing needs: somatic gene therapy, disability and identity.ÌýSwiss National Research Priority Programme Project 37, grant 4037-53073, EURÌý84,095 (1998-2001).ÌýSecond investigator, one research associate.

Ethical and theological issues in genetic manipulation. Rowntree Charitable Trust Fellowship, EURÌý38,705 (1995-1997).

Earlier research projects were in the fields of molecular neurodegeneration and oncogenesis.

Areas of supervision

  • Bioethics, especially of reproductive and genomic technologies
  • Empirical and qualitative approaches to bioethics
  • Feminist bioethics
  • Public health ethics, especially disasters and global health emergencies,Ìýincluding humanitarian responses and disaster victim identification
  • Public bioethics, including public engagement and deliberative methodologies
  • Disability studies in general; Deaf studies.

Currently supervising

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, ÁñÁ«¹ÙÍø) 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.Ìý Couples who are found to have an increased chance can then consider whether they would use this information in their reproductive decision making.Ìý 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. ÌýThese include genetic forms of deafness.

LucindaÌýis 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.Ìý 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.