Social Implications Of One Stop First Trimester Prenatal Screening
L218 25 2042
University of Warwick, Kings College London, City University & Havering Hospitals NHS Trust
Prof GA Lewando-Hundt & Prof J Sandall (co-PIs), Dr K Spencer, Professor R Heyman,Dr C Williams, Ms R Grellier
April 2001 - September 2004
Website
Abstract
The current evolution of genetic prenatal screening and testing involves three types of innovation:
- a novel form of risk management
- rapidly evolving biotechnology
- a shift, away from a focus on individuals towards management of risk factors in populations
A new development is a One Stop Clinic for Assessment of Risk for foetal abnormality, where women are screened in the first trimester, receive results within one hour of testing, and are offered next day diagnostic testing. There are only a few such clinics in the UK but the social implications of this innovative technology have not been investigated.
This is a multidisciplinary research proposal drawing together biochemistry, midwifery, sociology, anthropology and social policy perspectives. The study will explore and compare risks and benefits of innovative and established models of genetic prenatal screening as defined, perceived, and communicated by health professionals and pregnant women.
The research will take place at two hospitals: one offers the innovative one stop service, the other offers the currently prevalent system of second trimester prenatal screening.
The study will use a multi-method approach drawing upon retrospective, prospective and cross-sectional qualitative and quantitative, self reported and observational methods. Within and between site comparisons will be undertaken. Data to be collected includes individual qualitative interviews revealing multiple perspectives on clinic consultations of a sub-sample of women and health professionals. These will be contextualised within a prospective & retrospective survey sample of women that will examine their expectations about and reflections on the different screening processes.
Summary
Background
The current evolution of genetic prenatal screening and testing entails
three types of innovation. Firstly, it creates a culturally novel form of
risk management. Secondly, the underlying biotechnology is evolving rapidly.
A new development is a One Stop Clinic for Assessment of Risk for fetal
abnormality, where women are screened in the first trimester, receive results
within one hour of testing, and are offered next day diagnostic testing.
There are 2 such clinics in the UK, but the social implications of this
innovative technology have not been investigated.
Research Design
This is a multidisciplinary research proposal drawing together biochemistry, midwifery, sociology, anthropology and psychology. The study will explore and compare risks and benefits of innovative and established models of genetic prenatal screening as defined, perceived and communicated by health professionals and pregnant women. The research will take place at two hospitals: one offers the innovative one stop service, the other offers conventional second trimester prenatal screening. The study will use a multi-method approach drawing upon retrospective, prospective and cross-sectional qualitative and quantitative, self-report and observational methods. Within- and between-site comparisons will be undertaken. Data to be collected includes multiple perspectives on clinic consultations of a sub-sample of women and health professionals, and natural group interviews with clinic teams at the beginning and end of the project. This will be contextualised within a prospective/retrospective survey of a representative 15% sample of women examining expectations about, and reflections on the different screening processes.
Policy and Academic Implications
The study will offer insights into: 1) Participant's broader responses
to the new emerging technology of prenatal screening; their views about
its routinization; understandings of complex probabilistic information;
and feelings about family involvement in genetic decision-making. 2) The
impact of new screening technologies on and the social management of pregnancy
and inter-professional relationships, between obstetrics, midwifery and
biomedicine.
First trimester screening is being introduced in antenatal care but as yet,
the policy implications have not been explored and neither have the effects
on the skill mix in clinics, or on the women and their partners. Academically
this study will contribute to the literature on risk and in particular how
risks are explained and understood by health professionals, pregnant women
and their partners.
Contacts
Professor Gillian Lewando-Hundt
Outputs
Media
Spencer, K (Interviewee); Meikle, J (Journalist). New Down's Test is Quick and Safe. Guardian. 28/05/2001.
Spencer, K (Interviewee). OSCAR. Daily Mail. 29/05/2001.
Spencer, K (Interviewee); Sanders, C (Journalist). OSCAR's Winning Way. Times Higher Educational Supplement. 18/05/2001.
Spencer, K (Interviewee); Pay, N (Journalist). Breakthrough on Baby Tests. Romford Recorder. 08/06/2001.
Television
Spencer, K (Interviewee). OSCAR. BBC London Regional News. 29/05/2001.
Television
Spencer, K (Interviewee). OSCAR. London Today. 29/05/2001.
Radio
Spencer, K (Interviewee). OSCAR. Wellbeing Radio Channel. 30/05/2001.
Web site
Spencer, K (Interviewee). Early Warning Over Down's Risk. BBC Online. 29/05/2001.
Radio
Spencer, K (Interviewee). OSCAR. BBC Radio Essex. 30/05/2001.
Papers submitted
'Going with the flow', routinisation and constraints on informed decision-making and non-directiveness in a one-stop clinic offering first trimester prenatal screening for Down's Syndrome : a cross-sectional survey of women's experiences and views', Sandall,J. Pitson,L. Lewando Hundt, G. Williams, C. Heyman, B. Spencer, K. to British Journal of Obstetrics and Gynaecology
'Women as 'moral pioneers'?: experiences of first trimester nuchal translucency screening', Williams, C. Sandall, J. Lewando Hundt, G. Grellier, R. Heyman, B, Spencer, K. to Social Science and Medicine
'On being at higher risk: a qualitative study of 'new' and 'standard' prenatal screening for Down's syndrome' Heyman, B. Lewando Hundt G., Sandall J., Spencer K., Williams, C., Grellier R., Pitson L. to Health, Risk and Society
Williams C. 'Dilemmas in fetal medicine: premature application of a technology or responding to women's choice?' accepted by Sociology of Health and Illness.
Related papers
C. Williams 'Framing the fetus in medical work: rituals and practices' Social
Science and Medicine in press.
Conference Papers
Lewando-Hundt, G. Spencer, K., Sandall, J., Heyman, B., Williams, C., Pitson, L. , Grellier, R. and Tsouroufli, M. Technology and personhood: Experiencing ultrasound in 1st trimester pregnancy. Paper presented at the ESRC Cultures of the Gene seminar, University of Warwick, January 2004
Lewando-Hundt, G., Sandall, J., Spencer, K., Williams, C., Heyman, B. Pitson, L. Grellier, R. and Tsouroufli, M. The Impact and Meaning of Ultrasound in First Trimester Prenatal Screening. Poster presented at the 1st International Scientific meeting of the International Society of Ultrasound in Obstetrics and Gynaecology, Singapore, 2004
Sandall, J., Williams, C., Pitson, L., Spencer K., Lewando-Hundt, G., Tsouroufli, M. and Heyman, B. Fearing the worst? What do pregnant women feel at risk from? Abstract submitted to the Normal Labour and Birth: 2nd Research Conference, The Grange Hotel Conference Centre, Grange Over Sands, English Lake District, 9-11th June 2004
Lewando-Hundt, G., Sandall, J., Spencer, K., Williams, C., Heyman, B. Pitson, L. Grellier, R. and Tsouroufli, M. Issues of Risk, Identity and Social Organisation in the Routinisation of Prenatal Screening using Innovative Health Technologies. Abstract submitted to 1st Lancaster-Cardiff CESAGen International Conference, Cardiff, 2004
Heyman, B. Lewando-Hundt, G., Sandall, J., Spencer, K. Williams, C., Tsouroufli, M., Pitson, L. and Grellier, R. Risk, Innovation and Pregnancy. A Qualitative Study of new and 'traditional prenatal chromosomal prenatal screening. Abstract submitted to the International Qualitative Research Conference, Alberta, Canada 2004
Sandall, J. Pitson, L. Lewando Hundt, G. Spencer,K. Williams, C. Heyman,B. Tsouroufli,M. Grellier, R. Fearing the worst: What do pregnant women feel at risk from? Exploring the impact of innovative prenatal screening technologies, Nightingale School of Nursing and Midwifery School Research Seminar Programme 28th May 2004.
Sandall, J., Spencer,Williams, C., Pitson, L., Lewando, G. H. Heyman, B., Tsouroufli, M. and Grellier, R. Foretelling the future: Women's responses to innovative pregnancy and childbirth technologies, embodying risk and uncertainty or empowerment? Abstract submitted to the conference 'European Perspectives on Changing Health Systems.' Bologna, Italy, September 2004
Sandall J. Lewando Hundt G. Spencer K. Heyman B. Williams C. Pitson L. Tsouroufli M. Grellier, R. Reflections on Innovation and Routinisation : Women's Experiences in Prenatal Screening, invited presentation, Delivering and Experiencing Innovative Health Technologies: Users Perspectives, ESRC Innovatiove Health Technology Programme Annual Meeting, London, 3rd November 2004.
Sandall, J. Pitson, L. Lewando Hundt, G. Spencer, K. Williams, C. Heyman,B. Tsouroufli, M. Grellier, R. Foretelling the future: Women's responses to innovative pregnancy and childbirth technologies, embodying risk and uncertainty or empowerment? BSA 5th Annual Conference Human Reproduction Study Group, Northampton, 2nd December 2004.
Sandall, J. Lewando Hundt, G. Spencer, K. Heyman, B. Williams, C. Pitson,
L. Tsouroufli, M. Grellier, R. Reflections on Innovation, Routinisation
and Women's Experience of One-Stop Antenatal Screening , National Perinatal
Epidemiology Unit Seminar Series, Oxford, 9th November 2004.
Heyman, B. Lewando Hundt, G. Sandall, J. Spencer, K. Williams, C. Grellier, R. Pitson, L. On Being at Higher Risk: the emotional dimensions of risk, Health, Risk and Society Conference, 8-9th September 2003.
Hundt, G. , Tsouroufli, M., Sandall, J., Williams, C., Pitson, L. , Spencer, K. and Heyman, B. Social Implications of Innovations in Prenatal Screening, Poster presented at the 6th International Down's Syndrome Screening Congress, Regent College, London, 19-20th May 2003
Sandall, J. Lewando-Hundt, G., Williams, C., Pitson, L., Heyman, B., Spencer, K. Grellier, R. and Tsouroufli, M. Fearing the Worst? What do Pregnant Women in the UK feel at Risk from? Paper presented at the BSA Medical Sociology Group 35th Conference, York, 2003
Pitson, L. , Sandall, J., Lewando-Hundt, G., Williams, C., Heyman, B. , Spencer, K., Tsouroufli, M. and Grellier, R. Perceptions and Knowledge of Down's Syndrome about Screening in Pregnancy, Paper presented at the BSA Medical Sociology Group 35th Conference, York, 2003
Tsouroufli, M. , Lewando-Hundt G., Williams, C., Grellier, R., Sandall, J. , Pitson, L., Spencer K., and Heyman, B. Risk, Ethics and Choices in Diagnostic Ultrasound screening in Pregnancy, Paper presented at an International conference entitled: Dilemmas for Human Services 2003: A Post PNM Work? Ethics and Risk in a Changing Environment, Stafford, 3-5th September 2003
Pitson, L. , Sandall, J., Lewando-Hundt, G., Williams, C., Heyman, B. , Spencer, K., Tsouroufli, M. and Grellier, R. Perceptions and Knowledge of Down's Syndrome about Screening in Pregnancy, Paper presented at the BSA Human Reproduction Study Group Conference, Northampton, December 2003
Future conferences
Lewando Hundt, G. et al 'Mixed messages and multiple voices - evaluating prenatal screening technologies' ,Health Technology Assessment International Conference, Rome, 20th-22nd June 2005.
Sandall,J. et al 'Processes of Technology Diffusion and Implementation Around Prenatal Screening in Europe', Health Technology Assessment International Conference, Rome, 20th-22nd June 2005.
Sandall,J. Pitson,L., Lewando-Hundt,G. Spencer,K. Williams,C. Heyman,B. Tsouroufli,M., Grellier,R. 'Foretelling the future: Women's responses to pregnancy surveillance technologies, embodying risk and uncertainty or empowerment?' Accepted peer reviewed paper, 27th Triennial Congress of the International Confederation of Midwives Congress July 2005, Brisbane.
Sandall and a colleague at the University of Helsinki have had a session entitled 'Understanding the role of industry in the formation of professions' accepted in XVI World Congress of Sociology, Durban 23-29 July 2006 by Research Committee 52, The Sociology of Professional Groups which aims to explore the relationship between the development of new health technologies and the formation of professions and new professional projects.
Posters presented
Lewando Hundt,G. Tsouroufli, M. Sandall, J. Williams, C. Pitson, . Spencer, K. Heyman, B. Social Implications of Innovations in Prenatal Screening, Poster presented at the 6th International Down's Syndrome Screening Congress, Regent College, London, 19-20th May 2003.
Spencer, K. Lewando-Hundt,G. Sandall, J. Williams, C. Heyman, B. Pitson, L. Grellier, R. Tsouroufli, M. The Impact and Meaning of Ultrasound in First Trimester Prenatal Screening. Poster presented at the 1st International Scientific meeting of the International Society of Ultrasound in Obstetrics and Gynaecology, Singapore, 2004.
Sandall, J. Lewando Hundt, G, Tsouroufli, M. Williams, C. Pitson, Spencer, K. Heyman, B. Social Implications of Innovations in Prenatal Screening, Division of Reproductive Health, Endocrinology and Development, Research Symposium, King's College, London, 25th June 2004.
Sandall, J. Lewando Hundt, G. Tsouroufli, M. Williams, C. Pitson, L. Spencer,
K. Heyman, B. Social Implications of Innovations in Prenatal Screening,
Nightingale School of Midwifery and Women's Health, School Research Day,
King's College, London, 30th June 2004.
Book
Lewando-Hundt, G., Sandall, J., Spencer, K., Heyman, B., Williams, C. ,
Pitson, L. Grellier, R. and Tsouroufli, M.,Hewitson, J., Green, J., Hirst,
J., Ahmed, S., Thornton, J and Cuckle, H. Abstract submitted for a book
chapter in the Innovative Health Technologies Volume, November 2003
Book chapters under preparation
Lewando Hundt,G. Sandall,J. Spencer, K. Heyman, B. Williams, C. Pitson,
. Grellier, R. Tsouroufli, M. Hewison, J. Green, J. Hirst ,J. Ahmed, . Thornton,
. Cuckle, H. Prenatal Screening, Risk and Policy, Volume 2 Innovative Health
Technologies: Meaning, Context and Change, Ed. Webster, A.
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