The MyCode Community Health Initiative is a precision medicine project enrolling at Geisinger Health System locations in Pennsylvania and New Jersey. It includes a system-wide biobank designed to store blood and other samples for research use by Geisinger and Geisinger collaborators.
MyCode analyzes the DNA of patient-participants who sign up. More than 150,000 patient-participants have already signed up and our goal is to give every Geisinger patient the opportunity to participate. With such a large body of data, we hope to find ways to make healthcare better - for you, your family, your community and individuals around the world. We do this through research and, where appropriate, through the application of that research to your personal care. For example, we are already improving healthcare by finding ways to diagnose medical conditions earlier – even before symptoms appear – and also to help find new treatments or medications to manage these diseases.
The MyCode Community Health Initiative fosters substantial research aimed at:
- finding and confirming new pathogenic (disease-causing) changes in our genes;
- searching for changes in genes that actually provide protection from disease,
- targeting new drug development,
- and translation of these results into clinical care.
A clinical genomic infrastructure has been developed at Geisinger Health System to return clinical results to MyCode research participants in those cases where this information could prevent or deter disease or alter treatments. You can follow our return of results at go.geisinger.org/results. We have already reached hundreds of people, but will scale up our program to ultimately reach out to the many thousands of affected and potentially affected people.
The size of this genetic research effort along with the programs Geisinger has put in place to return medically important results to patient-participants is unique in the United States. In addition to the basic, scientific research that is being fostered, the MyCode program is also providing important opportunities to learn about the best ways and means to achieve clinical application of genomic and precision medicine. MyCode may well serve as a model for others around the nation and around the world to learn how best to use this information to improve patients’ lives.
Want to participate in MyCode?
You must sign and return the MyCode Community Health Initiative informed consent form in order to participate. Always read and consider carefully the terms and conditions of any consent form you sign. You can discuss the MyCode consent form – and any questions you may have about the form or the program – with trained personnel by sending an e-mail to JoinMyCode@geisinger.edu or by calling (toll free) 844-798-1687.
Donate a blood or saliva sample. You can do this in the following ways:
- About two extra tablespoons of blood will be collected for research each time you are already having blood drawn at Geisinger because your healthcare provider ordered some 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.
What does it mean to consent?
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:
- 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 genes that keep us healthy or make us sick.
Will I receive results?
If a researcher finds something that is important to your health, then we will tell you and your healthcare provider, as well as 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 are available.
What kind of results might I receive?
Most people in MyCode will not receive any results of their genomic testing. However, between two and four percent of participants will have a DNA change that needs more attention. The Genomic Medicine Institute team can help patients and providers understand and follow up on their results. Information about the conditions monitored in the MyCode program are contained in the list of clinically actionable genes available at the link to the right under the Resources heading. Many 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 or other treatments.