Photo of Professor Susan Kelly

Professor Susan Kelly

Email:

Extension: 5139

Telephone: 01392 725139

Director of PG Studies; Associate Professor

My office hours for Term 1, 2016/17 are Wednesdays 10:30-13:30, or by appointment. Please email me at s.e.kelly@exeter.a.uk or come by during my office hours.

 

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, which has grown out of Egenis (ESRC Centre for Genomics in Society), 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. Our work can be summed up as focusing primarily on the implications of technological innovation for the sociological understanding of diagnosis, and we are part of a new network of scholars in the sociology of diagnosis. We are collaborating with a number of research groups in the UK and beyond, developing projects on the implementation of new diagnostic technologies. I am interested in research methodologies in sociology and health-related research, and seek to employ novel methodological approaches. I teach modules on sociology of health and illness, disability, and the body, social theory, and methods at the undergraduate level, and research methods in sociology at the post graduate level.

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

My recent doctoral supervision includes:

Ernesto Schwartz Marin 'Genomic Sovereignty and The Mexican Genome: An ethnography of postcolonial biopolitics' (2012)

Daniele Carrieri 'Neurofibromatosis Type 1 (NF1): Patients and Families Experiences and Health Care System Management of a Complex Genetic Syndrome'

Recent 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 representation of psychiatric genetics, scientific controversies and test development, and user community responses. We have made numerous conference presentations from our research under this project, and have two publications accepted and several in process.

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. My recent paper on this topic has appeared in Science as Culture.

Is easier better? Public attitudes towards non-invasive pre-natal testing. 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. With Dr Farrimond I organised an interdisciplinary, international symposium on NIPD at the Brocher Foundation, held in November 2011. Currently, I am conducting several followon studies of NIPD, with collaborators at the University of Manchester, and with Dr Morrison at Exeter, on experiences of and attitudes toward, this new diagnostic technology. I am a member of the EurogeneTest working group on NIPD.

 

Current grants

2014 Brocher Foundation, Scholar in Residence Award, for April 2015. “Genetics goes online: New genetics and new media”(with Sally Wyatt and Anna Harris).

2014  Mainstreaming genomic medicine: Is there a duty to recontact?’ ESRC/MRC Ref. ES/L002868/1. S.E. Kelly (PI); Dr. Peter Turnpenny and Professors Anneke Lucassen and Angus Clarke (co-Is). £775,555.

Publications

Books

Kelly, S.E., (manuscript in process) Parenting in the Genetic Age: Parents, impairment and dilemmas of responsibility.

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

Elizabeth Alexander, Susan Kelly, Lauren Kerzin-Storrar (2014) Non-Invasive Prenatal Testing: UK Genetic Counselors’ Experiences and PerspectivesJ Genet Counsel DOI 10.1007/s10897-014-9765-9

Anna Harris, Susan E. Kelly & Sally Wyatt (2014) Autobiologies on YouTube: narratives of direct-to-consumer genetic testing, New Genetics and Society, 33:1, 60-78, DOI: 10.1080/14636778.2014.884456

Russell, G., Ford. T. Rosenberg, R. Kelly, S. (2014). The association of attention deficit hyperactivity disorder with socio-economic disadvantage:  Alternative explanations and evidence. Journal of Child Psychology and Psychiatry 55(5), pages 436–445.

 

 

 

Wyatt, S., Harris, A., Adams, S. and Kelly, S. (2013)  Illness online: Self-reported data and questions of trust in medical and social research (Theory, Culture and Society: Special Issue, The Social Life of Methods) 30(4): 131-150. Online ahead of publication  May 8, 2013 DOI: 10.1177/0263276413485900

Clayton, E. and Kelly, S. (2013) Asking the right questions. Commentary in Genetics in Medicine.  Published online 23 May 2013, Doi:10.1038/gim.2013.68

Harris, A., Kelly, S.E., Wyatt, S. (2013) Counseling customers: Emerging roles for genetic counselors in the direct-to-consumer genetic testing market. Journal of Genetic Counseling, 22 (2) 277 – 288. Published online ahead of publication October 12 2012 DOI:10.1007/s10897-012-9548-0

Russell, G., Kelly, S.E., Ford, T. and Steer, C. (2012) Diagnosis as a social determinant: the development of prosocial behavior before and after an autism diagnosis. Social Science and Medicine,75(9), 1642-1649.

Harris, A., Wyatt, S., Kelly, S.E. (2012) ‘The gift of spit (and the obligation to return it): How consumers of online genetic testing services participate in research’ Information, Communication and Society DOI:10.1080/1369118X.2012.701656 (online ahead of publication).

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

Kelly, S.E., H.R Farrimond (2012) ‘Non-invasive prenatal genetic diagnosis: a study of public attitudes’, Public Health Genomics 15(2):73-81.

Farrimond, H.R & Kelly, S.E.  (2011) 'Public viewpoints on new non-invasive prenatal genetic tests', Public Understanding of Science. DOI: 0.1177/0963662511424359 (online ahead of publication 15 November 2011. Volume 22 Issue 6 August 2013 pp. 736 - 750.

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 Paper Presentations From 2006 - 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. Post genomics, antenatal medicine, and the cell identity problem in non-invasive prenatal diagnostic technologies. Society for Social Studies of Science Annual Meeting, Tokyo, August 2010.

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. Workshop organiser, speaker and chair, New technologies for non-invasive prenatal testing: Connecting science with policy. EGN Annual International Conference, Cardiff. October 2009.

Kelly, S.E. Fetal cells and maternal bodies: biological objects and subject categories. Society for Medical Anthropology Annual Meeting, Yale University. September 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.