The study by Lisa Di Prospero and colleagues on the psychosocial impact of genetic testing for BRCA1 and BRCA2 mutations is important and one of the first to explore the perceptions of tested women in Canada.1 We believe, however, that it may be premature to state that the “organization of support groups for people found to have the gene mutation should be a priority” for clinical programs providing testing.
We are currently conducting a prospective study describing a range of outcomes of BRCA1 and BRCA2 testing among Quebecers during pretest genetic counselling and 1 month, 1 year and 3 years after result disclosure. Nearly half the projected consecutive series of 900 participants have been recruited to date. Participation exceeds 85%. Our data indicate relatively low interest in support groups in this population. Of the 91 subjects questioned to date at 1 year after they learned their test result, 27% of the people with a BRCA mutation (10/37), 20% of people with inconclusive results (2/10) and 14% of people without a BRCA mutation (6/44) expressed moderate or great interest in having access to support groups. Recent research among breast cancer patients suggests that peer discussion groups may be harmful to women who already have high levels of support.2 This is an important point, as 75% of the participants in the study by Di Prospero and colleagues felt that support from family and friends was meeting their needs.
We believe that psychosocial interventions for people undergoing genetic testing for breast cancer susceptibility are justified, given the current consensus that all people should have access to psychosocial care. However, given that our present state of knowledge is based on data from small numbers of tested people, more research may be needed before a clear-cut recommendation can be made concerning support groups.