Genetic Epidemiology

University of Utah

Questions & Answers

 

 Question - 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?

 Answer - 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.

 Question - Will I get any results?

 Answer - For some of our studies we offer screening tests. For example, the PSA test is administered to some male participants in our prostate cancer study.  For the intracranial aneurysm study our participants receive a free MRA screening for aneurysms and must access the results of the MRA from their personal physician. No other information, specifically genetic information, will be returned to you, and it is unlikely you will benefit personally from your participation in a study.

In addition, our research cannot tell if someone has, or will get, the disease being studied. We are not physicians or pathologists and therefore cannot diagnose diseases, including cancer. However, if during the course of the study, information is obtained that could be important to you or your family, we will let you know where you can go for genetic counseling and genetic testing.

 Question - How do you decide to study a particular family?

 Answer - 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.

 Question - Why do you need my blood if I am not in the bloodline that is being studied?

 Answer - 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.

 Question - Will participation in genetic research affect my health or life insurance?

 Answer - 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.

 Question - What are the advantages of finding a gene?

 Answer - 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.

 

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1/3/2000