Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2003 Apr;29(2):93-6.
doi: 10.1136/jme.29.2.93.

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

M P M Richards  1 , M Ponder, P Pharoah, S Everest, J Mackay
Affiliations

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

M P M Richards et al. J Med Ethics. 2003 Apr.

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.

PubMed Disclaimer

References

    1. Eur J Hum Genet. 2000 Oct;8(10):739-42 - PubMed
    1. Nat Rev Genet. 2001 Apr;2(4):318-21 - PubMed