Susan M. Cox, Ph.D.
Associate Professor and Michael Smith Foundation for Health Research Scholar
Susan Cox is an Assistant Professor and Michael Smith Foundation for Health Research Scholar at The W. Maurice Young Centre for Applied Ethics. From 1999 to 2003, Cox was a Postdoctoral Fellow and Research Associate at the Centre. She completed a PhD (in Sociology) at the University of British Columbia and MA and BA (in Sociology and Women's Studies) at Simon Fraser University.
Click here for the Qualitative Methods in Applied Ethics seminar's contribution to Celebrate Learning Week.
Cox specializes in medical sociology, bioethics and qualitative health research. She has long-standing interests in the social shaping and implications of technological change and a special interest in how new genetic knowledge and techniques reflect as well reshape contemporary understandings of nature and nurture, health and illness, normality and abnormality.
Other areas of specialization include disability studies, ethical dimensions of interpersonal communication (in clinical and non-clinical contexts), narrative, and the role of social science methodology in ethical analysis.
Cox’s research focuses on the social and moral dimensions of hereditary risk and genetic testing. She is especially interested in understanding the experiences of individuals and families at risk for, or affected by, a range of adult onset hereditary and/or genetic conditions (e.g., Huntington Disease and Autosomal Dominant Polycystic Kidney Disease).
Cox is currently conducting a three-year study on ‘appropriate’ uses of genetic information in the diagnosis, treatment and prevention of rheumatoid arthritis and Autosomal Dominant Polycystic Kidney Disease (see details). The goal of this CIHR funded study is to describe, from the perspectives of diverse stake–holders, the benefits, harms and other implications of the current (and foreseeable future) uses of genetic information in the diagnosis, treatment and prevention of these two diseases.
Cox is a co-PI with Jeffrey Nisker (Schulich School of Medicine, University of Western Ontario) on a new CIHR funded study project that uses live theatre as an innovative tool for engaging citizen participation in health policy development. "Engagement" includes attracting citizens to a forum in which they are able to participate; educating citizens to the scientific, clinical, ethical and social considerations; and developing empathy for the position of individuals immersed in the health issues to which policy is being developed. The principle outcomes of the research will be (i) an evaluation of theatre as an innovative method of public engagement in health policy development; (ii) a comparison of two strategies for post-performance audience discussion (i.e., in-theatre discussion and focus groups); and (iii) provision of multiple and diverse perspectives for use by Canadian health policy decision bodies regarding preimplantation genetic diagnosis (PGD), a controversial new technology with implications for stem cell derivation and cloning, as well as prenatal genetic testing and genomics.
Cox also collaborates on two other health–research related projects. The first is a Genome Canada study on democracy and processes of public engagement in policy–making in genomics (Dr. Michael Burgess, PI). This project will devise and evaluate diverse methods of ethical analysis that involve and attempt to balance public and expert interests (see website).
The second project is a CIHR training program, The Ethics of Health Research and Policy (Dr. Michael McDonald, PI). This program builds research and professional capacity in ethical aspects of health research and policy in Canada, at both the doctoral and postdoctoral levels (see website).
Grants & Awards
|2004–2006||(Jeffrey A. Nisker and Susan M. Cox, Co-PI's) Theatre as an Innovative Tool for Public Engagement in Health Policy Development. Canadian Institutes of Health Research, Operating Grant.|
|2002–2005||(Susan M. Cox, Principal Investigator) Appropriate Uses of Genetic Information in the Diagnosis, Treatment and Prevention of Autosomal Dominant Polycystic Kidney Disease and Rheumatoid Arthritis. Canadian Institutes of Health Research, Operating Grant|
|2002–2008||(Michael M. McDonald, Principal Applicant; Patricia A. Baird, FranÃ§oise Baylis, Tom L. Beauchamp, Fern M. Brunger, Timothy Caulfield, Susan M. Cox, Jocelyn G. Downie, Ruth R. Faden, Tim Flaherty, Janice Graham, Nuala P. Kenny, Barbara Koenig, Martin P. Richards, Jason S. Robert, Susan B. Sherwin, Charles E. Weijer, Co-Applicants) Ethics of Health Research and Policy Training Program. Canadian Institutes of Health Research, Strategic Training Grant|
|2002–2005||(Michael M. Burgess, Principal Applicant; Susan M. Cox, Peter Danielson, Michael McDonald, Wayne Norman, Co–Applicants) Democracy, Ethics and Genomics: Consultation, Deliberation and Modelling, Genome Canada Operating Grant|
|2002||(Susan M. Cox and Michael M. Burgess, Co–Applicants) Disability, Genetics and Ethics: Broadening the Curriculum. Enhancing Curriculum Diversity Grants, Women Student’s Office, University of British Columbia|
|2000–2001||(Susan M. Cox and Michael M. Burgess, Principal Applicants) Social and Moral Dimensions of Hereditary Risk and Genetic Testing: Creating a Framework for Comparative Analysis. Peter Wall Institute for Advanced Studies.|
|1999–2001||Postdoctoral Fellowship in Applied Ethics|
Centre for Applied Ethics
University of British Columbia
|1996–97||Shaughnessy Hospital Volunteer Society Fellowship in Health Care|
University of British Columbia
|1995||Kinetek Biotechnology Corporation Graduate Research Prize|
University of British Columbia Health Sciences
Social Sciences and Humanities Research Council of Canada
Cox currently teaches an interdisciplinary graduate seminar "Qualitative Methods in Applied Ethics Research" (INDS 502U) that is designed to meet the needs of interdisciplinary and applied ethics students currently engaged in, or collaborating with others engaged in, the data collection, analysis and/or write-up phases of a qualitative research project, especially those who do not have a strong background in the social sciences and/or previous experience in qualitative research design and analysis. Trainees enrolled in the CIHR-funded Ethics of Health Research and Policy Training Program (and associated CIHR-funded training programs) may also find the course especially relevant.
Cox has, for the last few years, also taught an interdisciplinary graduate seminar, Genetics and Ethics (MEDG 535 or INDS 502K) that is open to genetic counselling students as well as other graduate students with an interest in the social and ethical implications of genetics. She also does an annual lecture on narrative approaches to bioethics in the Applied Ethics Pro-Seminar (INDS 502D) and offers guest lectures on social and ethical aspects of hereditary risk and genetic testing.
Cox taught in the Faculty of Medicine for the "Doctor, Patient and Society" (DPAS 410 & 420) for several years and has teaching, supervisory and consulting experience in qualitative research design and methods. As a sessional instructor, Cox also taught courses in the sociology of health and illness, technology, work and society and, qualitative and quantitative analysis.
Cox chairs the Centre's Genetics and Ethics Research Group. Faculty, postdoctoral fellows and doctoral students in the group conduct social and ethical research on the context and effects of genetic and genomic knowledge and applications. Current projects include qualitative studies on genetic testing (for Huntington Disease, hereditary breast and ovarian cancer and Autosomal Dominant Polycystic Kidney Disease) as well as the commercialization of genetics and genetic services, issues related to collectives and communities, the ethics of DNA and tissue banking in genomic research and the governance of research.
Cox is also a member of the Coordinating Committee for the Centre and is active within several community–based organizations. She is a volunteer staff person at the annual summer retreat for persons with Huntington Disease and recently served on the Board of Directors of the British Columbia Chapter of the Huntington Society of Canada.
Cox is a past member and Chair of the Canadian Sociology and Anthropology Association’s Committee on Professional Ethics and maintains an active interest in research and professional ethics.
Cox's recent publications and conference presentations focus on familial experiences of hereditary risk and genetic testing, communication about risk and, the ethical and methodological dimensions of qualitative health research. She is currently exploring the uses of photography and found poetry as alternative methods of presenting genetic-based narratives. Cox also recently compiled and edited a collection of narratives about the experience of predictive testing (published by the Huntington Society of Canada) and is working on a forthcoming book, Living with Hereditary Risk: Genetic Testing and the Experience of Huntington Disease (Greenwood Publishing Group).
Cox's earlier publications focus on feminist responses to new reproductive technology, technological change and nursing, and the uses of software for qualitative data analysis.
Cox, Susan M. (forthcoming, October 2004). Context, Communication and Paradox (Or Learning Not to Ask "Overly Sensitive " Questions). In Julia Lawton, Susan Gregory and Nina Hallowell (Eds.) Reflecting Upon Research: The Perils, Pitfalls and Pleasures of Doing Social Science Research.
Cox, Susan M. (forthcoming, October 2004). Graceful Disengagement: Reflections on How Researchers and Participants Exit the Field. In Julia Lawton, Susan Gregory and Nina Hallowell (Eds.) Reflecting Upon Research: The Perils, Pitfalls and Pleasures of Doing Social Science Research.
Cox, Susan M., and Rosalie Starzomski. (2004). Genes and Geneticization? The Social Construction of Autosomal Dominant Polycystic Kidney Disease. New Genetics and Society, 23 (2): 133-166.
Cox, Susan M. (2004). Human Genetics, Ethics and Disability. In Janet L. Storch, Paddy Rodney and Rosalie Starzomski (Eds.) Ethical Leadership for Practice: An Advanced Sourcebook for Nurses and Colleagues in Health Care (pp. 378-95). Pearson Education Canada.
Cox, Susan M. (2003). Stories in Decisions: How At Risk Individuals Decide to Request Predictive Testing for Huntington Disease. Qualitative Sociology, 26(2), 257-280.
Cox, Susan M. (2003). Review of Ross Gray and Christina Sinding, 'Standing Ovation: Performing Social Science Research about Cancer'. Canadian Review of Sociology and Anthropology On-Line Book Reviews, October - November. <http://alcor.concordia.ca/%7Ecsaa1/BookReviews.htm#Book%20Reviews>
Cox, Susan M. (Ed.) (2002). Personal Perspectives on Genetic Testing for Huntington Disease. Cambridge, Ontario: Huntington Society of Canada.
Cox, Susan M. (2001). 'Review of Rayna Rapp, Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America.' Canadian Journal of Sociology Online, November - December. <http://www.arts.ualberta.ca/cjscopy/reviews/testing.html>
Starzomski, Rosalie, Susan M. Cox, Michael M. Burgess, Eugene C. Cameron. (2001). The Social Construction and Clinical Management of the Hereditary Aspects of Autosomal Dominant Polycystic Kidney Disease. Report submitted to the Kidney Foundation of Canada (February 12).
Brunger, Fern and Susan M. Cox. (2000). Ethics and Genetics: The Need for Transparency. In Fiona Miller et al (Eds.), The Gender of Genetic Futures: The Canadian Biotechnology Strategy, Women and Health. Proceedings of a National Strategic Workshop held at York University, February 11–12, 2000. National Network on Environments and Women’s Health Working Paper Series: York University. <http://www.cwhn.ca/groups/biotech/availdocs/workproc.htm>
Cox, Susan M. (1999). "It's Not a Secret But..." Predictive Testing and Patterns of Communication about Genetic Information in Families At Risk for Huntington Disease. Unpublished Doctoral Dissertation, University of British Columbia.
Cox, Susan M., and William H. McKellin. (1999). 'There's This Thing in Our Family': Predictive Testing and the Social Construction of Risk for Huntington Disease. Sociology of Health and Illness, 21 (5): 622–46. [Also published in Peter Conrad & Jonathan Gabe (Eds.), Sociological Perspectives on the New Genetics (pp. 121–45) Oxford: Blackwell Publishers.]
Bassett, Raewyn, Sue Cox and Ulrich Rauch. (1995). The Emperor’s New Clothes: Is There More to NUD.IST Than Meets the Eye? A Response to Wall's Concerns About Software for Qualitative Data Analysis. Society/Société 19(2):18–23.
Cox, Sue. (1994). Capitalizing on Care or Pursuing a Palliative? From High–Touch to High–Tech: Hospital Nursing and Technological Change'. Technology Studies, 1/2 (2): 179–82.
Benjamin, C. M., S. Adam, S. Wiggins, J. L. Thielmann, T. T. Copely, M. Bloch, F. Squitieri, W. McKellin, S. Cox, S. A. Brown, H. P. H. Kremer, M. Burgess, et al. (1994). Proceed With Care: Direct Predictive Testing for Huntington Disease. American Journal of Human Genetics, 55: 606–617.