Recruitment into our studies most commonly occurs when a clinician refers a patient to the study. From there, if the participant is interested, a study coordinator will meet with the patient at the clinic or call the patient to discuss the study. Additionally, since our studies are based on genetic factors, you may be asked to if you are interested in joining a study because an already recruited relative refers you, or other family members, through the study coordinator. The last way we recruit is by sending an introduction letter to potential participants.
Below are some of the more frequently asked questions about the gene studies we do. If you have any other questions, please contact us at (801) 581-5070.
Why was I asked to participate if only males (in the case of prostate cancer) or females (in the case of ovarian cancer) can get this form of disease?
Genes which predispose individuals to cancer can be passed to future generations through either males of females. Your blood sample could be critical in determining what is actually happening in your family. Also, there is evidence that some cancer genes may predispose individuals for other diseases. For example, the breast cancer genes BRCA1 and BRCA2 can also predispose males to prostate, colon, and breast cancers.
How do you decide to study a particular family?
We find a family that has more than three members with the same type of disease. Often, the initial cases that caught our interest are so distantly related that you might not even know them.
Why do you need my blood if I am not in the bloodline that is being studied?
Even though you may not be in the bloodline, your spouse and children are. By examining your blood we are able to understand from which bloodline your children received their genetic characteristics. If your spouse is deceased, we are able to determine what his/her genetic makeup was by using your blood and your children's blood.
Will participation in genetic research affect my health or life insurance?
Last year, a new law took effect that gave protection to people with genetically linked diseases. This law, called the Health Insurance Portability Act (formerly the Kennedy-Kasselbaum Bill), specifically prevents insurance companies from discriminating on the basis of genetic information. Some states have also passed similar bills that prevent insurance policies from denying, canceling, refusing to renew, charging more for coverage or providing different terms or benefits to people based on genetic characteristics. Indeed, the government understands the benefits that genetic research has contributed to battling diseases like cancer.
Your confidentiality is our highest priority. Information we received is kept strictly confidential. All names are removed from your blood sample and it is assigned a number. All files are password protected and will only be used by authorized people. Also, our research is not included in your medical records.
What are the advantages of finding a gene?
Once a gene is discovered, it becomes possible to identify individuals who are at high risk for disease through a diagnostic test, such as currently available for breast cancer (BRCAnalysis). With this information, they can make better health care choices for themselves. It could also lead to better preventative disease strategies and treatments in the future.