Health Technology Assessment 2004; Vol 8: number 33
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JM Green,1* J Hewison,2 HL Bekker,2 LD Bryant2 and HS Cuckle3
1 Mother and Infant Research Unit, University of Leeds, UK
2 Academic Unit of Psychiatry and Behavioural Sciences, University of Leeds, UK
3 Leeds Screening Centre, University of Leeds, UK
* Corresponding author
More genetic screening takes place during pregnancy and the newborn period than at any other time. These are key points in the life course where people are accessible to the health services. However, these are also periods when parents are at their most vulnerable. With developments in technology, such tests are multiplying. It is therefore considered important to understand the psychosocial aspects of screening in order that screening programmes can be designed in ways which minimise harm. Our plan of investigation had two guiding principles:
The review aimed to address five broad questions concerned with knowledge, anxiety, other emotional aspects of screening, factors associated with participation/non-participation in screening programmes and the long-term sequelae of false-positive, false-negative, true-positive and true-negative results.
Three revisions were made. The literature on other emotional aspects of screening and on false-negatives was too fragmented for useful conclusions to be drawn, and discussion of true-positives is confined to newborn screening, for the same reason.
This review started from a substantial literature base that provided the basis for (a) scoping the literature, (b) informing search strategy terms and (c) identifying preliminary article inclusion and exclusion criteria. The main eligibility criteria were:
There were no geographical or methodological limits except that studies asking only hypothetical questions and case reviews/single experiences were excluded.
Five electronic databases were searched, two journals were hand-searched and attempts were made to locate unpublished work. The data elicited from articles using the data extraction form developed for this study were entered into an SPSS database (version 10.1).
A total of 288 candidate publications were identified, 106 of which were eligible: 78 concerned with antenatal screening and 28 with newborn screening. The main findings were as follows.
The results of the review have many implications for the work of the National Screening Committee. The most pressing of these, in order of priority, relate to:
We suggest that research is conducted on the above four topics in order to fill gaps in the evidence base that relate to screening technologies which have been available for many years. In addition, future screening programmes will create a new list of research questions, based on the same main agenda but applied to new areas, for example, to
Research is needed which incorporates these topics into the mainstream of work, including that on informed consent, on the resource requirements of providing a satisfactory service, on people with false-positive results and on partners.
Green JM, Hewison J, Bekker HL, Bryant LD, Cuckle HS. Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review. Health Technol Assess 2004;8(33).
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The research reported in this monograph was commissioned by the HTA Programme as project number 93/56/99. As funder, by devising a commissioning brief, the HTA Programme specified the research question and study design. The authors have been wholly responsible for all data collection, analysis and interpretation and for writing up their work. The HTA editors and publisher have tried to ensure the accuracy of the authors report and would like to thank the referees for their constructive comments on the draft document. However, they do not accept liability for damages or losses arising from material published in this report.
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