Document Detail


Issues of consent and feedback in a genetic epidemiological study of women with breast cancer.
MedLine Citation:
PMID:  12672889     Owner:  NLM     Status:  MEDLINE    
Abstract/OtherAbstract:
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.
Authors:
M P M Richards; M Ponder; P Pharoah; S Everest; J Mackay
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Publication Detail:
Type:  Journal Article    
Journal Detail:
Title:  Journal of medical ethics     Volume:  29     ISSN:  0306-6800     ISO Abbreviation:  J Med Ethics     Publication Date:  2003 Apr 
Date Detail:
Created Date:  2003-04-03     Completed Date:  2003-06-06     Revised Date:  2009-11-19    
Medline Journal Info:
Nlm Unique ID:  7513619     Medline TA:  J Med Ethics     Country:  England    
Other Details:
Languages:  eng     Pagination:  93-6     Citation Subset:  E; IM    
Affiliation:
Centre for Family Research, University of Cambridge, Cambridge, UK. mpmr@am.ac.uk
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MeSH Terms
Descriptor/Qualifier:
Adult
Attitude
Breast Neoplasms / genetics*,  psychology
Confidentiality
Feedback, Psychological / ethics*
Female
Genetic Counseling / ethics
Genetic Testing / ethics
Humans
Informed Consent / ethics*
Interview, Psychological
Middle Aged
Motivation
Mutation / genetics
Ovarian Neoplasms / genetics
Patient Satisfaction
Comments/Corrections

From MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine


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