Issues of consent and feedback in a genetic epidemiological study of women with breast cancer
Journal of Medical Ethics 2003 April; 29(2): 93-96
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.
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Women's Need for Information Before Attending Genetic Counselling for Familial Breast or Ovarian Cancer: A Questionnaire, Interview, and Observational Study Hallowell, N.; Murton, F.; Statham, H.; Green, J.M.; Richards, M.P.M. (1997-01-25)OBJECTIVES: To describe women's information needs prior to genetic counselling for familial breast or ovarian cancer. DESIGN: Prospective study including semistructured telephone interviews before genetic counselling, o ...
Women's Need for Information before Attending Genetic Counselling for Familial Breast or Ovarian Cancer: A Questionnaire, Interview, and Observational Study Hallowell, N.; Murton, F.; Statham, H.; Green, J. M.; Richards, M. P. M. (1997-01-25)