There has been recent attention to considering what are the appropriate approaches to recruit family members into research that balances privacy concerns with effective recruitment strategies. We have examined how cancer patients (Index Patients) and their first-degree relatives feel about being contacted to participate in cancer/genetics research, and how this relates to privacy attitudes. We examined the association of these attitudes with participation in the Colon Cancer Risk Counseling (CCRC) study, as well as the association with socio-demographic characteristics and attitudes toward cancer/genetic research. This mail survey was sent to 1119 CCRC participants and there were 498 respondents. A majority of respondents reported they would mind if their names were given to researchers by their doctors (64%) or relatives (66%) without their permission. However, respondents generally would be willing to grant permission to their doctors (85%) and relatives (75%) for their names to be given to a researcher if asked. With respect to helping researchers recruit family members, respondents were least willing to give relatives names to researchers without first asking their relatives' permission (41%), preferring instead approaches that involved their own initial contact with their relatives such as first checking with the relative (79%), telling their relatives about the study and giving them the researchers phone number (78%), or forwarding a letter to their relatives on behalf of the researcher (67%). It might be acceptable for researchers to initiate contact with those family members who would not mind their information being given to the researcher without their permission, while obtaining permission from those family members who would mind. A single study, then, might offer index patients a variety of approaches for contacting family members from which they could make considered choices based on their understanding of their family members preferences as well as their own willingness to become engaged in the recruitment process.
| Hull, Sara Chandros; Gooding, Holly; Klein, Alison P et al. (2004) Genetic research involving human biological materials: a need to tailor current consent forms. IRB 26:1-7 |
