Rethinking Informed Consent in Genomic Research: A Case-based Approach to Develop Ethical Guidance and Training
Recent trends in the diagnosis of developmental disorders: are there really more children with autism, dyslexia and ADHD?
Foundation for the Sociology of Health and Illness
Professor Susan Kelly
Director of Research
My office hours for Term 1 2017/2018 are Tuesday and Thursday 11-12, or by appointment. Please email me at email@example.com 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), mental health, 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.
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.
Harris A., Kelly S., Wyatt S. (2016) CyberGenetics: Health genetics and new media. London: Palgrave.
Kelly, S.E., (manuscript in process) Parenting in the Genetic Age: Parents, impairment and dilemmas of responsibility.
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.
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.