April 28, 2009
Gene Talk: What do we expect from Families and their Doctors? is a US national study sponsored and funded by the National Institute of Health. The purpose of the study is to collect thoughts, opinions, and beliefs from patients and providers about who have responsibility for sharing genetic risk information within families, and when it is morally acceptable not to share information. One of the unique things about this study is that a quarter of the data will come from individuals who belong to support groups like yours and mine. The investigators believe that the opinions of people like us, who actually live with these situations, are key to their research. The remaining quarters have been collected and are as follows; experienced health care professionals, medical doctors, and health care consumers inexperienced in genetic illnesses.
The study is structured to be easily understood from the perspectives of both health care professionals and health consumers. All data is stored and managed by Jennifer Poat, the project manager for Gene Talk, at Oregon Health & Science University. If you have any questions regarding this study she welcomes your questions at 503-494-0198.
The data will be collected through an IRB-approved mailed survey. The survey will present 12 short stories about different ways providers and patients might react to situations that might involve sharing genetic information with family members. Each brief story is followed by 2 questions. The entire survey takes about 15 minutes to complete.
If you would like to participate, as a first step, please go to an online survey to fill out your contact information. Once you have done this, the survey will be mailed to you at the address you provided in the online survey. If you have questions, let me know, and I will get the answers from the researchers. It is important to note that the researchers will not have access to your email address. All information will remain confidential and that names will not be connected to answers.