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Logo of jmedethJournal of Medical EthicsVisit this articleSubmit a manuscriptReceive email alertsContact usBMJ
J Med Ethics. Apr 2003; 29(2): 93–96.
PMCID: PMC1733695

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


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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Selected References

These references are in PubMed. This may not be the complete list of references from this article.
  • Chadwick R, Berg K. Solidarity and equity: new ethical frameworks for genetic databases. Nat Rev Genet. 2001 Apr;2(4):318–321. [PubMed]
  • Gulcher JR, Kristjánsson K, Gudbjartsson H, Stefánsson K. Protection of privacy by third-party encryption in genetic research in Iceland. Eur J Hum Genet. 2000 Oct;8(10):739–742. [PubMed]

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