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Issues of consent and feedback in a genetic epidemiological study of women with breast cancer
  1. M P M Richards1,
  2. M Ponder1,
  3. P Pharoah2,
  4. S Everest3,
  5. J Mackay4,*
  1. 1Centre for Family Research, University of Cambridge, Cambridge, UK
  2. 2Department of Oncology, University of Cambridge, Cambridge, UK
  3. 3Department of Medical Genetics, Cambridge University, Cambridge, UK
  4. 4Department of Oncology, Cambridge University, Cambridge, UK
  1. Correspondence to:
 M Richards, Centre for Family Research, University of Cambridge, Free School Lane, Cambridge CB2 3RF;
 mpmr{at}cam.ac.uk

Abstract

Women (N=21) who had had breast cancer and had been enrolled in a large genetic breast cancer epidemiological study were interviewed about their experience of participation in the study, their attitudes to the confidentiality of data, and the feedback of personal and general research results. Collection of family history information seemed more salient in indicating the genetic nature of the study than the enrolment information sheet. There were no concerns about confidentiality.

While participants would have welcomed general feedback about the results of the study and were critical that this had not been provided, the feedback of personal information proved complicated and, sometimes, difficult. It is suggested that individual feedback of genetic test information in epidemiological studies should be undertaken only when there are specific reasons.

  • confidentiality
  • feedback of research results
  • consent procedures
  • genetic risk information
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Footnotes

  • * Present address: Clinical Genetics Unit, Institute of Child Health, University of London, London, UK

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