Issues of consent and feedback in a genetic epidemiological study of women with breast cancer.

@article{citeulike:4082, 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.}, address = {Centre for Family Research, University of Cambridge, Cambridge, UK. mpmr@am.ac.uk}, author = {Richards, M. P. and Ponder, M. and Pharoah, P. and Everest, S. and Mackay, J. }, citeulike-article-id = {4082}, issn = {0306-6800}, journal = {J Med Ethics}, keywords = {consent, family-studies}, month = {April}, number = {2}, pages = {93--96}, posted-at = {2004-12-16 17:20:17}, title = {Issues of consent and feedback in a genetic epidemiological study of women with breast cancer.}, url = {http://view.ncbi.nlm.nih.gov/pubmed/12672889}, volume = {29}, year = {2003} }

TY - JOUR ID - citeulike:4082 L3 - citeulike-article-id:4082 TI - Issues of consent and feedback in a genetic epidemiological study of women with breast cancer. JF - J Med Ethics VL - 29 IS - 2 SP - 93 EP - 96 AD - Centre for Family Research, University of Cambridge, Cambridge, UK. mpmr@am.ac.uk SN - 0306-6800 N2 - 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. KW - consent KW - family-studies AU - Richards, MP AU - Ponder, M AU - Pharoah, P AU - Everest, S AU - Mackay, J PY - 2003/04// UR - http://view.ncbi.nlm.nih.gov/pubmed/12672889 ER -