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Geisinger
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MyCode® Community Health Initiative

The MyCode® Community Health Initiative is a precision medicine project at Geisinger that includes a system-wide biobank designed to store blood and other samples for research use by Geisinger and Geisinger collaborators. A biobank is like a bank, but instead of securely storing money, it securely stores your blood or saliva sample and information, along with the samples and information from thousands of other Geisinger patients. Samples and information in the biobank are used to do health research.

Ultimately, our goal is to find ways to make health care better - for you, your family, your community and individuals around the world.

How the MyCode® Community Health Initiative Works

MyCode will help researchers understand the relationship between genes and diseases. The goal is to help improve health care by finding ways to diagnose medical conditions earlier or before they appear and also to help find new treatments or medications to manage these diseases.

Blood or saliva samples are collected from Geisinger patients like yourself and your family. This project predates but is highly aligned with President Obama's Precision Medicine Initiative announced in his State of the Union message in January 2015.

Researchers will use the information gleaned from this study to help develop treatment tailored to the individual needs of Geisinger patients, what we call precision medicine.

Your Consent

The first step to your participation is to discuss MyCode with a team member who is trained to give you all of the information you need to make an informed decision. Any Geisinger patient may be a part of MyCode Community Health Initiative. Pediatric patients (people who are less than 18 years old) may participate with the consent of their parents. We encourage parents and children to participate together.

You must sign and return the MyCode Community Health Initiative informed consent form in order to participate. When you consent to participate in MyCode, you agree to:

  • Let us look at and use information in your electronic health record for research.
  • Donate a blood or saliva sample:
    • About two extra tablespoons of blood will be collected for research each time you are already having blood drawn because your healthcare provider ordered tests, or
    • When it is convenient for you to stop by the lab, or
    • You may be asked to donate a saliva sample when you come in to see your healthcare provider, or
    • You may request a saliva kit and send it back to us through the mail.
  • Give us permission to contact you in the future if we need more information.
  • Give us permission to contact you in the future to tell you about other research studies.

What will Geisinger do with my sample?

  • Researchers might study all of your genes or only some of your genes.
  • We will look at your sample and your electronic health record in order to study changes in your genes that keep you healthy or make you sick.

Will I receive results?

If a researcher finds something that is important to your health, then we will tell you, your healthcare provider and put it in your medical record. It is your choice whether or not to follow up with your healthcare provider or the MyCode Clinical Genomics team to discuss the possibility of further testing, monitoring or treatment.

All results are treated with complete confidentiality.

Geisinger experts are available to assist you and your healthcare provider in understanding your result. Educational materials and care guidelines will be available.

What kind of results might I receive?

Most people in MyCode® will not receive any results of their genomic testing. However, about two percent of participants will have a DNA change that needs more attention. The GenomeFIRST™ team can help patients and providers understand and follow up on their results. Information about each condition is below. Most conditions are linked to an increased risk for cancer or heart disease.

If you are a Geisinger patient and think that you may be at increased risk for cancer or heart disease, you should discuss this with your doctor. You may still join MyCode®, but your doctor may also want to consider clinical genetic testing.

Click to see the Geisinger program's progress in returning genomic results.

Questions?

If you have questions about joining, receiving results, or would like to speak with a MyCode team member, please e-mail JoinMyCode@geisinger.edu or call (toll free) 844-798-1687.