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How do women feel about their cervical cytology samples being used for research?
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  1. Caroline Coope1,
  2. Karen Rose2,
  3. Anna Glasier3,
  4. Judith Stephenson4
  1. 1Research Fellow, Centre for Sexual Health & HIV Research, Research Department of Infection and Population Health, University College London, London, UK
  2. 2Specialist Registrar, Well Woman Services, Dean Terrace Centre, Edinburgh, UK
  3. 3Honorary Professor, Department of Obstetrics & Gynaecology, The University of Edinburgh, Edinburgh and Faculty of Public Health and Policy, London School of Hygiene & Tropical Medicine, London UK
  4. 4Margaret Pyke Professor of Sexual & Reproductive Health, Research Department of Reproductive Health, Institute for Women's Health, University College London, London, UK
  1. Correspondence to Dr Caroline Coope, Research Department of Epidemiology & Public Health, University College London, 1–19 Torrington Place, London WC1E 6BT, UK; caroline.coope{at}ucl.ac.uk

Abstract

Background and methodology The introduction of liquid-based cytology (LBC) for cervical screening in the UK has enabled research into human papillomavirus as an adjunct to screening and provides potential opportunities for population-based research into women's health. The authors explored women's views on the use of remnant LBC samples for sexual and reproductive health research. A pilot study was conducted to assess the acceptability of collecting and storing remnant LBC specimens for future use in sexual and reproductive health research. Women attending a clinic for their routine smear test were recruited to the study. Semi-structured interviews were conducted with a subsample of the women to explore acceptability issues.

Results Of women invited to participate (n=369), 86% (n=316) consented to the storage and use of their remnant sample for research. Of these, 96% (n=304) consented to their sample being linked to reproductive health records. Women interviewed (n=23) were happy with the research process although unclear about what future research might be conducted on their specimen and what health records would be accessed.

Discussion and conclusion As research becomes technically and ethically more complex the challenge remains to find the right balance between providing sufficient relevant information to ensure informed consent and allay participant's fears, while guarding against the inclusion of excessive detail. The introduction of LBC for cervical screening across the UK brings a new opportunity to integrate research studies within a national cervical screening programme. Our study suggests this is acceptable to women.

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Footnotes

  • Funding This work was undertaken at UCLH/UCL who received a proportion of funding from the Department of Health's National Institute for Health Research Centres funding scheme. The authors are also grateful for the support of the Margaret Pyke Trust for their ongoing contribution to the programme of reproductive health research at UCL. The study was funded by UCLH Clinical Research Development Committee. The funding source was responsible for the London site ethical review of study. They had no other involvement in the study.

  • Competing interests None.

  • Ethical approval The study was ethically reviewed and approved by UCLH Clinical Research Development Committee and NHS Lothian.

  • Provenance and peer review Not commissioned; externally peer reviewed.