Group Identity and Genetic Research
This project seeks a deeper understanding of the complex interactions between genetic research and knowledge and group identity. Its objective is to facilitate mutually beneficial, effective, and sustainable collaborations between genetic researchers and community organizations that will enhance communities' role in the provision of genetic research and services. The specific goals of this project are (1) to explore the processes and mechanisms through which new genetic knowledge interacts with existing group identity, and (2) to make accessible the results of this exploration to communities and genetic researchers. To these ends, the project will conduct in-depth interviews with leaders of organizations that are most active in shaping community interactions with genetic researchers and in setting the scientific, cultural, and political agenda of the organizations that they represent. This project will promote a productive dialogue between genetic researchers and community organizations by exploring the ways in which genetic information relates to group identity and how this relationship leads communities to create "ethical boundaries" for genetic research and services. The issue is relevant to leaders of community organizations as well as to genetic researchers who seek to include ethnic, disabilities, and other groups in their research projects.
Participation in the project is voluntary; the decision to participate or to refrain from participating will have no negative consequences for you. No one but study personnel will know whether you have decided to participate. Neither your personal identity nor the identity of your organization will be revealed in any articles or presentations emerging from the study. In addition, should you decide to participate, the content of your responses will be kept confidential as well. You may refuse to answer any question and, in addition, you may withdraw from the study at any time.