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Title: Dr. Job Title: Egenis Senior Research Fellow Tel: 01392 269139 Fax: 01392 264676 Email: s.e.kelly@exeter.ac.uk Building: Byrne House, Streatham Campus, University of Exeter Room Number: FF14
My principal areas of interest are emerging technologies for non-invasive prenatal diagnosis; sociology of the science of fetal/maternal cell and other natural and produced forms of micro/chimerism, with a particular interest in the ‘disruptive’ potential of various forms of genetic multiplicity; the phenomenology of impairment specifically within the context of genetic and other biomedical intervention into childhood genetic disorders; impacts and clinical implications of genetic discoveries for common and complex disorders; and direct-to-consumer genetic testing. As a Senior Research Fellow at Egenis, I am developing or continuing projects in these areas. My work is informed by my training in medical sociology (University of California, San Francisco) in which I studied the sociology of health and illness and qualitative research methods. My doctoral dissertation examined the interplay of science and public ethics bodies in early controversies over the use of human fetal tissue in experimental treatments for Parkinson’s Disease in the US. During a post-doctoral research fellowship at the Stanford University Center for Biomedical Ethics I undertook research into various forms of genetic testing in both sociological and policy contexts. As Associate Faculty at the University of Louisville I conducted research into experiences of families with children affected by genetic conditions. I am currently writing a monograph on social and biomedical contexts of intervention into impairment and dilemmas of responsibility experienced by parents. As Affiliated Faculty in the School of Medicine, I taught and mentored medical staff in the conduct of social and behavioral science research in public health, resulting in a range of medical service related research projects.
Current research projects
Selling genetic tests online: User perspectives on direct to consumer psychiatric genetic tests. With Professor Sally Wyatt, VKS, Maastricht, Netherlands. Examining on-line represerntation of psychiatric genetics, scientific controversies and test development, and user community responses.
Fetal/maternal cell transfer, non-invasive prenatal diagnosis and naturally occurring micro-chimerism. A sociological examination of the developmental trajectory of feto-maternal microchimerism science, the techno-scientific development and ‘production’ of fetal and maternal cells and genetic material, and the ongoing construction of theory/method packages through which prenatal diagnostic goals are intertwined with biomedical platforms and initiated into clinical practice.
Is easier better? Public attitudes towards non-invasive pre-natal testing. With Dr Hannah Farrimond, Egenis. The project will investigate public perceptions of non-invasive pre-natal testing. It aims to access the thinking of ordinary people about these new technological advances so that their views and perspectives are represented alongside those of the scientists developing the technology and the clinicians who will be called upon to implement the tests.
Books
Kelly, S.E., (manuscript in process) Parenting in the Genetic Age: Parents, impairment and dilemmas of responsibility.
Book Chapters
Kelly, S. E., ‘Qualitative interviewing techniques and styles’ in I.L. Bourgeault, R. DeVries, and R. Dingwall (eds.), Handbook on Qualitative Health Research, Sage Publications, 2010: 307-326.
Kelly, S. E., ‘Introduction. Section One. Biomedical Applications’ in P. Atkinson, P. Glasner and M. Lock (eds), The Handbook of Genetics and Society: Mapping the New Genomic Era, London: Routledge, 2009.
Kelly, S.E., 'From scraps and fragments to whole organisms: Molecular biology, clinical research and post genomic bodies' in P. Atkinson and P. Glaser (eds), New Genetics, New Identities, London: Routledge, 2006: 44-60.
Kelly, S.E., 'Genetic essentialism and social deviance: Intersections of genetic science and collective identity movements' in R. Tewksbury and P. Gagné (eds), Deviance and Deviants, Los Angeles, CA: Roxbury Publishing Company, 2000: 137-149.
Kelly, S.E. and Koenig, B.A., 'Rescue technologies following high dose chemotherapy for breast cancer: How social context shapes the assessment of innovative, aggressive, and life-saving medical technologies', in P.J. Boyle (ed), Getting Doctors to Listen: Ethics and Outcomes Data in Context, Washington, DC: Georgetown University Press, 1998: 126-152.
Estes, C.L., Kelly, S.E. and Binney, E.A., 'Bioethics in a disposable society: Health care and the intergenerational stake', in James W. Walters (ed), Choosing Who’s to Live: Ethics and Aging, Chicago: University of Illinois Press, 1996: 95-119.
Articles
Russell, G., Kelly, S., and Golding, J., 'A qualitative analysis of lay beliefs about the aetiology and prevalence of autistic spectrum disorders', Child: Care, Health & Development, 2009.
Kelly, S.E., ‘Choosing not to choose: Reproductive responses of parents of children with genetic conditions or impairments’, Sociology of Health and Illness, 31(1), January 2009, pp. 81-97.
Kelly, S.E., 'Toward an epistemological Luddism of bioethics', Science Studies, 19(1), 2006, pp 69-82.
Kelly, S.E., 'From scraps and fragments to whole organisms: Molecular biology, clinical research and post genomic bodies, in Paul Atkinson and Peter Glaser (eds.), New Genetics, New Identities, London: Routledge, 2006, 44-60.
Furman, C., Kelly, S.E. , Mowery, R.L and Miles, T.P., 'Eliciting goals of care in an academic nursing home', Journal of the American Medical Directors Association, 2006.
Kelly, S.E., Binkley, C.J., Neace, W.P. and Gale, B.S., 'Barriers to parental care seeking behavior for children’s oral health among low income parents', American Journal of Public Health, 95, 2005, pp 1345-1351.
Kelly, S.E. “A different light”: Examining impairment through parent narratives of childhood disability, Journal of Contemporary Ethnography, 43(2), 2005, pp 180-205.
Kelly, S.E., 'Public bioethics and publics: Consensus, boundaries, and participation in biomedical science policy', Science, Technology, & Human Values, 28(3), 2003, pp 339-364.
Kelly, S.E., 'Bioethics and rural health: Theorizing place, space, and subjects', Social Science & Medicine, 56(11), 2003, pp 2277-2288.
Kelly, S.E., 'The ‘new genetics’ meets the old underclass: Findings from a study of genetic outreach services in rural Kentucky', Critical Public Health, 12(2), 2002, pp 169-186.
Kelly, S.E., 'Genetic essentialism and social deviance: Intersections of genetic science and collective identity movements' in R. Tewksbury and P. Gagné (eds.) Deviance and Deviants, Los Angeles, CA: Roxbury Publishing Company, 2000, 137-149.
Furr, L.A. and Kelly, S.E., 'The Genetic Knowledge Index: Developing a standard measure of genetic knowledge', Genetic Testing, 3(2), 1999, pp193-199.
Fox, P., Kelly, S.E. and Tobin, S.L., 'Defining dementia: Social and historical background of Alzheimer Disease', Genetic Testing (3), 1991, pp 13-19.
Kelly, S.E. and Koenig, B.A., 'Rescue technologies following high dose chemotherapy for breast cancer: How social context shapes the assessment of innovative, aggressive, and life-saving medical technologies', in P.J. Boyle (ed.), Getting Doctors to Listen: Ethics and Outcomes Data in Context, Washington, DC: Georgetown University Press, 1998, pp 126-152.
Kelly, S.E., Marshall, P.A., Koenig, B.A., Sanders, L.M., and Raffin, T.A., 'Understanding the practice of ethics consultation: Results of an ethnographic multi-site study', Journal of Clinical Ethics, 8(2), 1997, pp 136-149.
Estes, C.L., Kelly, S.E., and Binney, E.A., 'Bioethics in a disposable society: Health care and the intergenerational stake' in James W. Walters (ed.), Choosing Who’s to Live: Ethics and Aging, Chicago: University of Illinois Press, 1996, pp 95-119.
Reviews
Kelly, S.E., Book review of 'Redesigning Life? The Worldwide Challenge to Genetic Engineering', Brian Tokar, ed. (2001), in Contemporary Sociology 31,4, 2002, pp 464-465.
Kelly, S.E., 2001, Book review of 'Genetic Maps and Imaginations: The Limits of Science in Understanding Who We Are' (1998), Barbara Katz Rothman, in Contemporary Sociology, 30(3), 2001, pp 261-262.
Selected other publications
Kelly, S.E., Invited Commentary on Klaus Hoeyer, "Studying ethics as policy: The naming and framing of moral problems in genetic research", Current Anthropology, 2005, pp 46. S5.
Kelly, S.E., 'Hormone Decision Is All About Risk', Newsday (Invited Op Ed). ALL EDITIONS, Pg. A31. New York, NY, Newsday, Inc., 2002 (July 17).
McConnell, L.M., Keonig, B.A., Greely, H.T. and Members of the Alzheimer Disease Working Group of the Stanford Program in Genomics, Ethics, and Society. (1999). Genetic testing and Alzheimer Disease: Recommendations of the Stanford Program in Genomics, Ethics and Society. Genetic Testing 3(1):3-12.
Koenig, B.A., Greely, H., McConnell, L. and Members of the Breast Cancer Working Group of the Stanford Program in Genomics, Ethics, and Society. (1998). Genetic testing for BRCA1 and BRCA2: Recommendations of the Stanford Program in Genomics, Ethics, and Society. Journal of Women’s Health 7(5):531-545.
McConnell, L., Koenig, B.A., Greely, H.T., Raffin, T.A. and The Alzheimer Disease Working Group of the Stanford Program in Genomics, Ethics & Society, 'Genetic testing and Alzheimer disease: Has the time come?', Nature Medicine, 4(7), 1998, pp 757-759.
Selected Conference and Workshop Papers
Kelly, S.E. and Farrimond, H. 'Non-invasive prenatal genetic testing: A study of public attitudes', International Society for Prenatal Diagnosis, 15th International conference, Amsterdam, The Netherlands, 11-14 July 2010.
Farrimond, H. and Kelly, S.E., 'Interrogating the concept of non-invasiveness in new reproductive testing technologies', Humanities at the Cutting Edge - Association of Medical Humanities Annual Conference, Peninsula Medical School, Truro, 5-7 July 2010.
Kelly, S.E. ‘Application driven research in biomedicine: the development of non-invasive prenatal genetic diagnosis’. International workshop, 'Data-driven research in the biological and biomedical sciences', Egenis, University of Exeter, 28-29 June 2010.
Farrimond, H. and Kelly, S.E., 'New non-invasive prenatal genetic technologies: Public understandings and concerns', European Meeting on Psychosocial Aspects of Genetics, Gothenburg, Sweden, 12-15 June 2010.
Kelly, S. E. and Farrimond, H., 'Public attitudes to non-invasive prenatal testing', ESRC Genomics Network Conference, ‘Mapping the Genomic Era: Measurements and Meanings’, Cardiff, 7-9 October 2009.
Kelly, S.E., ‘Maternal-fetal cell transfer science: problems at the maternal-fetal boundary’, Fragmented bodies: Women, technologies, economies seminar series, Department of Sociology & Criminology, University of the West of England and University of Bristol, 27 January 2009.
Kelly, S.E., ‘Problems with chimerism: Identity, disruption and onto-technical production’, EGN Conference, 'Genomics and Society: Reinvinting Life?' London, 27-28 October 2008.
Kelly, S.E., ‘Intervention discourses: parents and childhood impairment’, British Sociological Association Medical Sociology Section Annual Meeting, 5 September 2008.
Kelly, S.E., ‘Crossing spaces - fetal cell microchimerism and stem cell science’, Cellular Spaces: A CBAR-Workshop on Cells, Egenis, University of Exeter, 30 June - 1 July 2008.
Kelly, S.E., ‘Fetal cells and reproductive genetics as biosocial objects: Dynamics of a peripheral research tradition’, CESAGen/CSG Fourth International Conference, Royal Society, London, 2007.
Kelly, S.E., 'Narrative, ethics and technological assemblages: Fetal cells and maternal bodies,' British Sociological Association Medical Sociology Group Annual Conference 2006, Edinburgh.
Kelly, S.E., “From ‘scraps and fragments’ to ‘whole organisms’: Molecular biology, clinical research and post genomic bodies”, Genomics and Society, First Lancaster-Cardiff CESAGen International Conference, Royal Society, London, 2-3 March, 2004.
Kelly, S.E., “Barriers to Parental Care Seeking Behavior for Children’s Oral Health Among Low Income Parents”, International Association for Dental Research, Honolulu, HI, March 13, 2004.
Kelly, S.E., 'Reproductive testing, pregnancy termination, and disability: Responses of parents of children with genetic conditions', Society for the Study of Social Problems (SSSP), (Health, Health Policy and Health Services Division/Family Division) Annual Meeting, Atlanta, GA, 2003.
Kelly, S.E., 'Geography and culture in rural genetic practice', Institute for Genetics, Biorisk and Society. University of Nottingham, Nottingham, 2002.
Kelly, S.E., 'Kentucky Genetic Outreach Program clients', 44th Annual Maternal and Child Health Conference, Kentucky Department of Public Health, Division of Adult and Child Health, 2001.
Kelly, S.E., 'Bioethics and rural health: Lost in space', American Sociological Association Annual Meeting, Anaheim CA, 2001.
Kelly, S.E., 'Consensus in bioethics: Case study', Co-Chair, Refereed Roundtable on Sociology of Medical EthicsAmerican Sociological Association Annual Meeting, Chicago, IL, 1999. Kelly, S.E., Session Co-organizer (with David Guston), Consensus and Consensus Formation in Science and Medicine (I and II), Society for Social Studies of Science, Annual Meeting, San Diego, CA, 1999.
Kelly, S.E., 'Studying work to explore ethics: A methodological note on the emerging sociology of bioethics', Chaired roundtable session: Sociological study of ethics, values and aging. American Sociological Association Annual Meeting, San Francisco, CA, 1998.
Kelly, S.E., 'Ethics and policy in genetic testing for Alzheimer Disease', Chaired roundtable session: Sociological study of ethics, values and aging. American Sociological Association, Annual Meeting, Toronto, Canada, 1997.
Kelly, S.E., 'Stalking the rare fetal cell: Social and ethical issues in emerging prenatal diagnostic technologies', Stanford Center for Biomedical Ethics, Works-in-Progress Seminar, 1997.
Kelly, S.E., ' What does sociology have to contribute to ethics, values and aging?' Chaired roundtable session: Sociological study of ethics, values and aging. American Sociological Association Annual Meeting, New York, NY, 1996.
Kelly, S.E., 'Technologized innovation: Human and therapeutic continuums', Society for the Study of Social Problems (SSSP), 1995.
Kelly, S.E., 'Fetal tissue transplantation research for Parkinson’s Disease: Issues of therapeutic innovation and the elderly', Gerontology Research Day, University of California, San Francisco, 1994.
Kelly, S.E., 'Fetal tissue and aging policy: Ethical challenges to medical progress', 31st International Congress of the International Institute of Sociology, Sorbonne, Paris, France, 1993.
Kelly, S.E.,'Bioethics and public policy across the life course: The social construction of moral politics', Society for the Study of Social Problems, Pittsburgh, PA, 1992.
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