Ethical issues in recuiting families for genetics resear

最近，人们开始注意考虑采取何种适当的方法招募家庭成员参与研究，以平衡隐私问题和有效的招募策略。 我们研究了癌症患者（索引患者）及其一级亲属对参与癌症/遗传学研究的感受，以及这与隐私态度的关系。我们研究了这些态度与参与结肠癌风险咨询（CCRC）研究的相关性，以及与社会人口特征和对癌症/遗传研究的态度的相关性。 该邮件调查发送给1119名CCRC参与者，有498名受访者。大多数受访者表示，如果他们的医生（64%）或亲戚（66%）未经他们的许可将他们的名字透露给研究人员，他们会介意。然而，受访者通常愿意允许他们的医生（85%）和亲属（75%）将他们的名字提供给研究人员。 在帮助研究人员招募家庭成员方面，受访者最不愿意在没有事先征得亲属同意的情况下将亲属的名字告诉研究人员（41%），而更喜欢自己与亲属进行初步接触的方法，例如首先与亲属联系（79%），告诉亲属有关研究的情况并给他们研究人员的电话号码（78%），或代表研究人员向其亲属转发信件（67%）。 研究人员可以主动与那些不介意在未经其许可的情况下将其信息提供给研究人员的家庭成员联系，同时获得那些介意的家庭成员的许可。因此，一项单独的研究可能会为索引患者提供各种联系家庭成员的方法，他们可以根据对家庭成员偏好的理解以及自己参与招募过程的意愿做出深思熟虑的选择。

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.