Social And Ethnic Differences In Attitudes And Consent To Prenatal Testing
L218 25 2013
Leeds University & St James' University Hospital
Professor J Hewison, Dr J Green, Professor HS Cuckle, Professor RF Mueller & Mr J Thornton
June 2001 - December 2003
Website
Abstract
Advances in DNA technology mean that prenatal tests will soon become available
for more and more disorders, many of which will be unfamiliar to most people.
Obtaining separate informed consent to each is likely to cause confusion
and provoke considerable anxiety in parents, and some system of obtaining
broad classes of consent may soon be required. Such a classification system
will need to be built on parents' attitudes to testing and their perceptions
of the similarities and differences between disorders. Adequate information
to inform any kind of classification is not at present available, and information
on potential demographic differences is also lacking.
The first aim of the proposed study - which began in psychology, but draws
on other social science and clinical disciplines - is to compare the attitudes
of different social and ethnic groups to prenatal testing for a range of
disorders. The second aim is to describe and compare, between disorders,
and between social and ethnic groups, the reasons offered by participants
for similarities and differences in their attitudes. The third aim is to
use the data collected so far to devise a classification system for consent
to prenatal testing, and to assess its performance when used in a hypothetical
consent process with new groups of participants.
To achieve these aims, quantitative attitude data to prenatal testing for a range of disorders will be collected from several hundred women in the late stages of pregnancy, and qualitative data to expand on people's reasons for their beliefs will be collected from a subsample of pregnant women, and from people attending genetic services.
These data will be used to devise a classification system for use in a hypothetical informed consent process. The ability of such a system to strike a successful compromise between withholding information that people would wish to have, and giving them information they would not wish to have will be tested in the second study.
Summary
Background
Advances in DNA technology mean that prenatal tests will soon become available for more and more conditions, many of which will be unfamiliar to most people. Obtaining separate informed consent to each is likely to cause confusion and provoke considerable anxiety in parents, and some system of obtaining broad classes of consent may soon be required. Such a classification system will need to be built on parents' attitudes to testing and their perceptions of the similarities and differences between conditions. Adequate information to inform any kind of classification is not at present available, and information on potential demographic differences is also lacking.
Research Design
This study will compare the attitudes of different social and ethnic groups to prenatal testing for a range of conditions, using quantitative attitude data collected from several hundred women who have recently had a baby. The study will also compare the reasons people give for similarities and differences in their attitudes, using more detailed interview data collected from a subsample of mothers, and from people attending genetic services. All of this information will be used to devise a classification system for use in a hypothetical informed consent process. The ability of such a system to strike a successful compromise between withholding information that people would wish to have, and giving them information they would not wish to have will be tested using focus groups and individual interviews in the final phase of the study.
Policy and Academic Implications
Many official reports have drawn attention to the problem of achieving informed consent in prenatal and genetic testing. By developing a consent process based on the views and attitudes of a wide range of people, this study has the potential to have a major impact on the delivery of care and the amelioration of difficulties caused by poor communication between providers and users of health services. The study will also contribute to a theoretical understanding of attitude structures and how these vary between individuals and groups within society.
Contacts
Outputs
Oral Presentations
Ahmed S, Hirst J, Hucknall C, Green, J. Cuckle, H. Thornton, J. Mueller,
R and Hewison, J . Attitudes towards prenatal testing and termination: views
of mothers of children with genetic conditions. Journal of Infant and Reproductive
Psychology, 22 (3): 230-231 August 2004 (published abstracts)
Hirst J, Ahmed S, Hucknall C, Green, J. Cuckle, H. Thornton, J. Mueller,
R and Hewison, J. Social and ethnic differences in attitudes and consent
to prenatal testing. UK Forum for Health care Law and Ethics Conference
- 2nd April 2004, University of Newcastle.
Ahmed S, Hirst J, Hucknall C, Green, J. Cuckle, H. Thornton, J. Mueller, R and Hewison, J. Social and ethnic differences in attitudes and consent to prenatal testing. CESAgen 1st International Conference - Genomics & Society - 2nd March 2004, The Royal Society, London.
Poster Presentations
Ahmed S, Hirst J, Green JM, Cuckle HS, Thornton J, Mueller RF, Hewison J. Social and ethnic differences in attitudes to prenatal testing & termination of pregnancy. Journal of Medical Genetics, 41: S85-S85 Suppl. 1 2004 (published abstracts)
Hirst J, Ahmed S, Hucknall C, C. Green, J. Cuckle, H. Thornton, J. Mueller,
R and Hewison, J. Women's attitudes to prenatal testing and termination
of pregnancy across a range of conditions: patterns and explanations European
Meeting on Psychosocial Aspects of Genetics, 2004
Hirst, J. Ahmed, S. Hucknall, C. Green, J. Cuckle, H. Thornton, J. Mueller,
R. Hewison, J. Social and Ethic Differences in Attitudes and Consent to
Prenatal Testing. European Meeting of Psychosocial Aspects of Genetics,
Strasbourg, May 2002.
A poster presentation has been accepted for the 22nd Annual conference for
the Society of Reproductive and Infant Psychology in September 2002.
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