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Egenis · People

Dr. Susan Kelly

Egenis Senior Research Fellow

Telephone

01392 725139

Fax

01392 724676

Email

s.e.kelly@exeter.ac.uk

Room

FF18

Building

Byrne House, Streatham Campus, University of Exeter

Biography

My research interests centre around the development of new biomedical forms of investigation and intervention into human bodies and beings, focusing particularly on the arenas of reproduction (prenatal testing and diagnosis), psychiatric genetics, childhood disorders, and complex diseases. My current interests focus on implications of next generation sequencing and post-genomic science for biomedical understanding and clinical practice; for example, applications of post-genomic technologies to understanding processes of, and intervening in, human reproduction; and problems of interpretation and clinical introduction of whole genome sequencing data. I am also interested in the increasing salience of microchimerism from a longstanding interest in gestational cell transfer, other produced and natural forms of chimerism, and related technologies of 'visibility'.

As director of the Health, Technology and Society (HTS) research group at Egenis, I oversee the research activities of a group of research fellows involved in a variety of projects examining developments in the science and technology of medicine, genomic medicine in particular.

I have recently completed a study of public attitudes relevant to the introduction of non-invasive prenatal genetic diagnosis, and am studying continued scientific developments and relevant ethical and regulatory contexts (Europe and the United States). I am extending this project to examine a range of developments in the field of prenatal diagnosis, and implications of trends towards earlier and more informative diagnosis, and intervention, in pregnancy. I was lead organiser of a symposium at the Brocher Foundation on 10-11 November 2011 on this topic.

I currently hold an ESRC/NWO grant to study direct-to-consumer genetic testing looking specifically at tests for mental and psychiatric disorders. I am also finalising a manuscript on genetic and other forms of biomedical intervention into childhood disorders, theorising 'intervention' and parental responsibility on the basis of empirical research into paediatric genetics. I am interested in research methodologies in sociology and health-related research, and seek to employ novel methodological approaches.

My work is informed by doctoral training at UCSF (sociology of health and illness, and qualitative research methods) and subsequent postdoctoral training in genetics, bioethics and history and philosophy of science.

Current research projects

. With Professor Sally Wyatt, VKS, Maastricht, Netherlands. Examining on-line representation of psychiatric genetics, scientific controversies and test development, and user community responses.

. 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.

. With Dr Hannah Farrimond, Egenis. This research investigated public perceptions of non-invasive pre-natal testing. Its aim was to access the thinking of ordinary people about these new technological advances so that their views and perspectives can be represented alongside those of the scientists developing the technology and the clinicians who will be called upon to implement the tests.

Publications

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. Gagná (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

Wright Clayton, E. and Kelly, S.E., Let us ask better questions, Genetics in Medicine, Online first, May 2013.

Wyatt, S., Harris, A., Adams, S. and Kelly, S. Illness online: Self-reported data and questions of trust in medical and social research, Theory, Culture and Society, online ahead of publication May 2013.

Russell, G. Kelly, S. Ford, T. & Steer, C., Diagnosis as a social determinant: The development of prosocial behaviour before and after an autism spectrum diagnosis. Social Science & Medicine 75(9), November 2012; 1642–1649.

Harris, A., Kelly, S. and Wyatt, S., Counseling Customers: Emerging Roles for Genetic Counselors in the Direct-to-Consumer Genetic Testing Market, Journal of Genetic Counseling, 22(2), April 2013: 277-2882012.

Harris, A., Wyatt, S. and Kelly, S. 'The gift of spit (and the obligation to return it): How consumers of online genetic testing services participate in research', Information, Communication & Society (early online view), July 2012.

Kelly, S.E., 'The maternal-foetal interface and gestational chimerism: the emerging importance of chimeric bodies?' Science as Culture, 21(2), June 2012, pp.233-257.

Farrimond, H. R. and Kelly, S.E., 'Public viewpoints on new non-invasive prenatal genetic tests', Public Understanding of Science, Published online before print 15 November 2011.

Kelly, S.E. and Farrimond, H.R., 'Non-invasive prenatal genetic testing: A study of public attitudes', Public Health Genomics, Published online before print 15 November 2011.

Kelly, S.E., 'Testing Technologies', Britian in 2012, pp. 89, 1 November 2011

Kelly, S.E., 'A Coming Revolution', the gen, The Newsletter of the ESRC Genomics Network, (3), pp. 21-23, 9 November 2011

Russell, G. and Kelly, S.E., 'Looking beyond risk: A study of lay epidemiology of childhood disorders', Health, Risk and Society, 13 (2), 2011, pp.129-145.

Kelly, S.E. 'Genomic medicine: The social science view', Science 331 (6023), March 2011: p 1387.

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.

  • Revised and republished in Genetic Governance: Heath, Risk and Ethics in the Biotech Era, Robin Bunton and Alan Petersen (eds.), London: Routledge, 2005, 137-151.

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 'Assisting Reproduction, Testing Genes: Global Encounters with New Biotechnologies', D. Birenbaum-Carmeli and M.C. Inhorn (eds.), Sociology of Health and Illness, 33 (3): pp 500–502.

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., 'Is easier always better? Thoughts on the development and implementation of non-invasive prenatal genetic testing and future reproduction', public lecture at Vanderbilt University Center for Biomedical Ethics and Society, 4 April 2013.

Kelly, S.E., Harris, A. and Wyatt, S. 'Intersecting determinisms: Genetics goes online', Challenges to Researching, Engaging and Governing the Messiness of Convergence, ESRC Genomics Policy and Research Forum, University of Edinburgh, Edinburgh, Scotland, 27 - 28 September 2012.

Harris, A., Wyatt, S., and Kelly, S.E., 'Autobiologies on YouTube: New contexts for storytelling about genetics', Genetics goes online workshop, Maastricht University, The Netherlands, 12 – 14 September, 2012

Kelly, S.E., 'Choosing not to choose: reproductive responses of parents of children affected by a genetic condition', University of Manchester School of Medicine, 21 November 2011.

Kelly, S.E., 'Review of social implications identified with NIPD', Brocher Foundation Symposium, Geneva, 10-11 November 2011.

Kelly, S.E., with Harris, A. and Wyatt, S. 'The gift of spit (and the obligation to return it): How consumers of online genetic testing services participate in research', Genetics as Culture in a Consumerist Age – Interdisciplinary Symposium, University of Innsbruck, Austria, 27-29 October 2011.

Kelly, S.E., with Harris, A. and Wyatt, S., 'Health-e skepticism: trust in the age of the internet', Oxford Internet Institute Annual Conference, Oxford, 21-23 September 2011.

Kelly, S.E., 'Relationship between research and clinical testing: implications for clinical management of incidental findings', Human Genetics Commission, London, 13 September 2011.

Kelly, S.E., 'Prospective parents, potential parents, and reproductive responsibility: Implications of universal carrier screening proposals', Universal Carrier Screening workshop, ELSI Centres for Excellence, Pacifica, California, 11-12 July 2011.

Farrimond, H.R and Kelly, S.E., ‘It made me think’: Using Q-methodology to investigate public viewpoints of emerging pre-natal genetic technologies', 7th International Mixed Methods Conference, University of Leeds, 29 June - 30 June 2011.

Kelly, S.E., 'Non-invasive prenatal diagnosis: querying the role of risk in the organization of prenatal diagnostic testing', University of Maastricht, 15 June 2011

Kelly, S.E., with Harris, A. and Wyatt, S. ‘The medium and the message: Genetic counselling in the direct-to-consumer genetic testing industry’, European Society of Human Genetics Annual Meeting, Amsterdam, 28-31 May 2011.

Kelly, S.E., ‘Non-invasive prenatal genetic testing: Current work and perspectives from the United Kingdom', ELSI Congress:Exploring the ELSI Universe, University of North Carolina, 12-14 April 2011.

Kelly, S.E., 'Non-invasive prenatal genetic testing: A study of public attitudes', Center for Biomedical Ethics and Society, Vanderbilt University, 23 March 2011.

Kelly, S.E. and Farrimond, H. 'Non-invasive prenatal genetic testing: A study of public attitudes', NOWGEN, University of Manchester, 15 February 2011.

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.

Comments:

Kelly, S.E., 'New telomere tests do not predict when you will die, but you may still want the information', BioNews, June 2011.