Conclusion: genetic diversity and science communication - some issues of 'translation' and language.

This commentary concerns some key themes from the symposium. While molecular genetics may provide new opportunities to articulate biological concepts of race, the ideological baggage associated with the term suggests that it is best dropped from discussions. In screening programmes and genetic practice, ethnic identity is likely to be an uncertain surrogate to identify individuals with particular genetic variants. Precise language and explanation will aid communication about genetic matters. Talking of genes for particular traits or diseases is unhelpful. School teaching of classic Mendelian genetics is ineffective and should be replaced with some teaching of elementary developmental biology based on matters of everyday salience and interest. Social science literature is replete with unfounded claims of geneticization.

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.