Sharing Your Results 

sharing-results-landing-remadeAs a CPMC participant, you control who gets to see your genetic information. You may choose to share your genetic information with your healthcare provider, genetic counselors, family members, friends or scientific researchers. Participation in the study does NOT require that you share your information with anyone. You can control who you share your information with through the "My Account" page of the web portal.

Sharing Your Results With Your Healthcare Provider

You may want to share your results with your healthcare provider. This can be done by printing out your reports. After logging in to your CPMC account, scroll down to "My Genetic Results." To the right of each report name there is a "Print Report" button. Clicking on the "Print Report" button will open a new window containing a printable version of your report.

Your genetic risk results may or may not change what your healthcare provider will recommend. He or she may decide to screen you for a disease more frequently. It may also be the case that he or she will remind you of prior recommendations for diet, exercise and lifestyle. Your genes cannot be changed, but with your healthcare provider's help, you can make changes to your lifestyle and behaviors that may help to lower your disease risk or lead to an earlier diagnosis.

sharing-results-inside-1Sharing Your Results with a Genetic Counselor

A genetic counselor is a healthcare provider who has special training in medical genetics and counseling. Genetic counselors are not physicians and do not diagnose diseases or prescribe treatments. Instead, a genetic counselor will help you understand your genetic results and inform you of available options to address your risk.

The Coriell Personalized Medicine Collaborative has board-certified genetic counselors that are available to talk with you in person or over the telephone about the genetic information you learn as a result of being in the study. You may speak with a CPMC genetic counselor free of charge before or after viewing your results.

To talk with a CPMC genetic counselor, sign into your CPMC account, select the "Request an Appointment" link on the "My Account" page and submit your request.

Sharing Your Results with Your Family or Friends

Gene changes are inherited or passed on through families. Information that you learn about your genetic risk may impact the disease risk of other family members. If you are found to have a genetic risk factor, it does NOT mean that all of your relatives will also have the same genetic risk factor, but it does increase their chances. A genetic counselor can help you to identify family members that may have also inherited a genetic risk factor.

Talking with your family about risk and disease may be difficult. Some families share more health information than others. Some family members may not want to know anything about their genetic risk. A genetic counselor can also talk with you about issues of sharing health and risk information with your family.

Releasing Your Results to Other Researchers

You may choose to release your genetic results to researchers from either non-profit or for-profit organizations. If you choose to do so, genetic data from analysis of your saliva and the health history information you provide will be given to researchers in a de-identified format (no information that could identify you will be provided).

By allowing researchers to use your information you will:

  • Help researchers find gene changes that increase or decrease the risk of disease
  • Help researchers to confirm gene changes that were previously found to be "associated" with a disease by other scientists
  • Contribute to the optimization of the healthcare system by furthering the current understanding of genetic information and its impact on health and disease risk