The Construction Of Risk Estimates In A Cancer Genetics Clinic
L218 25 2046
Cardiff University, University Of Wales College Of Medicine And University Of Wales: Swansea
Dr LF Prior, Dr J Gray, Professor D Hughes & Professor R Pill
April 2001 - March 2004
Website
Abstract
This research is designed to examine the manner in which technologies of
risk assessment are operationalized in a regional (NHS) cancer genetics
service. It will involve a study of the various organisational, technical
and intellectual processes that surround the act of allocating a 'risk'
to an individual, as well as some of the health policy and health care implications
that flow from the risk assessment.
The research is designed in the context of an in-depth case study of a cancer
genetics service. The focus of the study will be on the professionals who
work within the clinic (which operates on 3 separate sites within Wales);
the documentation, artefacts and procedures that such professionals use
in their determination of risk assessments; and the implications of such
assessments for a sample of patients drawn from a variety of risk categories,
as well as the implications for the health services more generally.
By providing detailed empirical data on all aspects of risk assessment in a clinical context, it is intended that the results of the study will contribute to current work in those areas of medical sociology and the sociology of science/technology concerned with the new genetics, and be of positive benefit to health professionals and those concerned with the planning of secondary (and to a lesser extent, primary) health services. In the latter contexts, we would hope that our work might contribute to an improvement of risk communication procedures that are used in genetics clinics, and that our data on the resource implications of offering risk assessments to people predisposed to relatively common familial cancers will be of use to service planners.
Summary
Background
Recent work in genetics has made it possible to identify healthy individuals
and families who may be predisposed to certain types of cancer - such as
breast, ovarian and colorectal cancer. In any population most individuals
are likely to be assessed as being at 'low' risk of such predisposition,
though some would be assessed as 'medium' or 'high' risk. The determination
of a person's risk can profoundly influence a large number of important
personal and medical decisions.
Assembling a cancer genetics risk estimate is a complex matter, and various
technologies and processes are routinely involved. In all instances the
evidence gathered in the clinic has to be expertly interpreted by clinicians,
laboratory scientists, and nurse-counsellors. Yet, exactly how such professionals
arrive at a risk assessment in any one instance, and what kinds of consequences
flow from their judgements are issues that are currently under-researched.
It is to the examination of such processes that this project is directed.
Research Design
The project is centred on a multi-site regional cancer genetics service.
The nodal points for the study will consist of individual cases of risk
assessment. Following approval from appropriate ethics committees, and consent
from individual patients, about 65 risk assessments will be followed as
they progress through the service. How the risk estimates for each case
are arrived at will be studied using a variety of qualitative methods. These
will concentrate on capturing what professionals say and do within the context
of clinic procedures. Interview, conversational and observational data will
be collected in addition to relevant documentary materials.
Because allocation to a risk category has implications for the patients
and for the health service as a whole, the researchers will also study the
treatment and management decisions that are consequent upon a risk assessment.
Interviews will be used to follow up on how patients integrate risk assessments
into their everyday affairs.
Policy and Academic Implications
We intend our work to contribute to scholarly enquiry on the construction and management of risk, the deployment of science and technology in human service organizations, risk communication, and issues relating to the allocation of health service resources. Above all, however, we hope to shed light on how innovations in clinical genetics serve to redefine the work of health professionals, the nature of 'the patient', and the nature of disease itself.
Contacts
Outputs
1. Activities in chronological order
(1) Presentation on the Project to the Wellcome Summer School on Genetics. Cambridge . September 2001.
(2) Presentation on early findings to a joint UWCM, Cardiff University and University of Cambridge meeting on Genetics and Society, held at Cardiff University , November 2001.
(3) 'Decision making and rule following in a genetics clinic'. Paper Delivered to the Sociolinguistics Symposium. Gent . April.2002.
(4) 'Making Risk Visible'. Paper presented to the XV World Congress of Sociology, Brisbane. July 2002.
(5) 'Risk Assessments in Cancer Genetics', Paper presented to the Annual Meeting of the British Association for the Advancement of Science. Leicester , September 10th, 2002
(6) ‘Making Risk Visible’. Paper presented to the BSA Medical Sociology Conference. York . September 27th-29th, 2002
(7) Interview with BBC Radio on ‘Genetic Tests for the Public’. Available on BBC web page. http://news.bbc.co.uk/1/hi/in_depth/sci_tech/2002/leicester_2002/
(8) Report of Project to a joint meeting of ESRC/IHT award holders and GlaxoSmithKline, GSK Headquarters, Stevenage , October 30th 2002 .
(9) Presentation on the Project to the Genetics and Society Joint Meeting of Cardiff and Cambridge at Gregynog Hall, Powys 30 th April – 1 st May, 2003
(10) Presentation to Meeting of the Royal Society of Medicine and the King George and Queen Elizabeth Foundation. ‘Genetics. Ethical Questions in Medicine and the Law’. Cumberland Lodge. March 2003.
(11) ‘Breast Cancer and Genetic Risk’. Presentation to 40th Anniversary Conference of Breast Cancer Care. Royal College of Physicians. June 9th, 2003
(12) Presentation on the Patient's View of Inherited Cancer Risk to Annual Meeting of Innovative Health Technology Programme. London : October 2003.
(13) HGC (2003) Consultation on the supply of genetics tests direct to the public. Response of Jonathon Gray and Lindsay Prior.http://www.hgc.gov.uk/testingconsultation/gray_prior.htm
(14) ‘Genetic Risk. The patient's viewpoint’. Presentation delivered to 'Reality not hype: the new genetics in primary care'. London Ideas Genetic Knowledge Park , Royal College of Physicians. Jan 30th 2004 .
(15) ‘The implications of cancer genetic risk assessment for patients’. Presentation to meeting of Wales Gene Park, Norwegian Church , Cardiff Bay , February 11 th, 2004 .
(16) Referrals to a Cancer Genetic Service. A content analysis of GP letters. Presentation to the South West Society of Academic General Practice. March 2004
(17) ‘Repositioning the Patient. The implications of ‘being-at-risk’’. Paper presented to the ESRC Seminar Series on Cultures of the Gene, Institute of Health , University of Warwick , May 5 th, 2004 .
(18) ‘Repositioning the Patient. The implications of ‘being-at-risk’’. Paper presented to the Annual Meeting of the Society of Academic Primary Care. Glasgow . July, 2004.
(19) ‘Repositioning the Patient. The implications of ‘being-at-risk’’. Paper presented to the Annual Meeting of the Medical Sociology sub-group of the BSA. York , September, 2004.
(20) The genetics of breast cancer – what patients think and doctors say. Presentation to Breast Cancer Care Cymru. Newport . November 2004.
(21) ‘Metaphors of the gene’. Paper presented to Cesagen Conference. London , April 2005.
(22) ‘Metaphors of the gene’. Paper presented to BSA Medical Sociology Regional Meeting at Swansea , February, 2005.
(23) ‘Talking about the gene for cancer. Language and Metaphor in Clinical Genetics.’ Seminar presentation, Innogen Seminar Series, Edinburgh , August 2005.
(24) ‘Using Technology to Transfer Expertise. Problems & Potential in Cancer Genetics’. Presentation to HTAi Conference, Rome , July 2005.
(25) ‘Talking about the gene for cancer’. Paper presented to BSA Medical Sociology Conference. York , September, 2005.
(26) ‘Talking about the gene for cancer’. Paper presented to Nursing Research Group. Queen’s University, Belfast , November, 2005.
(27) ‘Talking about the gene for cancer’. Paper presented to meeting of regional research centres, Aix-en-Provence , March 2006.
(28) ‘ Lay perceptions of genetic risk and the gene(s) for cancer’. Paper to be presented to Cancer Genetics, Insight and Perspectives. London , Royal College of Physicians , April 2007.
2. Publications to Date:
(1) Prior, L. (2001) 'Risk, Rationing and Genetics: All Categories Have Wheels'. Sociology of Health and Illness. 23:5:570-93. And re-printed as next item.
(2) Prior, L. 'Risk, Rationing and Genetics. All Categories Have Wheels'. In D. Light and D. Hughes (eds) Rationing. Constructed Realities and Professional Practices. Oxford , Blackwell, 2002. Pp.20-43.
(3) Prior, L., Wood, F., Gray, J., Pill, R. and Hughes, D. (2002) 'Making risk visible. The role of images in the assessment of genetic risk'. Health, Risk and Society, 4:3: 241-258.
(4) Prior, L. 'Genetic Risk'. (2003) Encyclopaedia of the Human Genome. Ed. D.N. Cooper and N. Thomas. Vol.2. Pp. 902-904. London : Nature Publishing.
(5) Wood, F., Prior, L. and Gray, J. (2003) 'Translations of risk. Decision making in a cancer genetics service'. Health Risk and Society , 5:2:185-198.
(6) Prior, L. (2003) 'Documents in Action II. Making things visible'. Being Chapter 4 of, Prior, L. Using Documents in Social Research. London & Thousand Oaks , CA. Sage.
(7) Scott, S., Prior, L., Wood. F. and Gray, J. ‘Re-positioning the patient. The implications of 'being at risk'. Social Science and Medicine. 60:1869-1879.
Papers submitted for publication during 2006 :
Prior, L. ‘Talking about the gene for cancer. Language and Metaphor in Clinical Genetics.’ Submitted to Sociology Spring 2006.
Bharadway, A., Prior.L., Atkinson, P. et al. The Genetic Iceberg: Risk and Uncertainty. In, Innovative Health Technologies. New Perspectives, Challenges and Change (Ed. A. Webster).
News
Tuesday, 10 September, 2002
Experts urge genetic test controls
The sale of over-the-counter genetic tests in the UK should be strictly
controlled, experts have warned.
Dr Lindsay Prior makes comment - please visit the BBC website here for the
full article