The goal of the MyCode™ Community Heath Initiative is to bring the power of genomic research to Geisinger patients. The MyCode™ Community Health Initiative is a Geisinger system-wide biobank designed to inform, consent, collect and store blood and other samples for broad research use by Geisinger researchers and approved collaborators outside of Geisinger.
All patients at Geisinger will have the opportunity to potentially consent and become part of this exciting research program. Patients are recruited in specialty clinics, primary care clinics, community awareness sessions and online. Almost 50,000 Geisinger patients participated in the initial MyCode™. Consenting under the expanded protocol began in October 2013.
The Prinicipal Investigators for the MyCode™ Community Health Initiative are David Carey, PhD. and Andy Faucett, MS. The project has been made possible by funding from the Ben Franklin Technology Development Authority, Geisinger Clinic's Administrative Committee for Research, internal Geisinger research funding and the current expansion is being jointly funded by Geisinger and Regeneron Pharmaceuticals, Inc..
The MyCode™ Community Health Initiative Process
The first step to participation is a consent discussion with a MyCode™ Community Health Initiative team member trained to provide you with all of the information necessary to make an informed decision. Feel free to take the information home and discuss it with your family or you can complete consent during your clinic visit.
Soon online consenting will also be an option for Geisinger patients. This will be available in MyGeisinger under the "Advancing Healthcare" Tab where you can also learn about research opportunities at Geisinger. Completing online consent in MyGeisinger allows us to inform your physician of your interest and participation in research.
Participation in the MyCode™ Community Health Initiative is free of charge both to individuals and their insurers. Our goal is to enroll all Geisinger patients who wish to join the project. In order to be able to participate, volunteers must be:
- Under the care of a Geisinger primary care physician or specialist
- At least 18 years of age
- Pediatric patients may participate with the consent of their parents who are encouraged to participate jointly.
Patients who do not understand the project or have been diagnosed with or exhibit signs of dementia or Alzheimer's disease are not eligible to participate. Individuals who are candidates for clinical genomic testing can participate, but are encouraged not to delay medically indicated testing while hoping for study results.
What will I be asked to do?
- Complete the MyCode TM consent form.
- When you have blood drawn, we may collect about two tablespoons of extra blood for research. There may also be other opportunities to provide a sample.
- Allow us to access information in your electronic health record for research.
- What will Geisinger do with my sample?
- Your samples contain genes that are made up of DNA and serve as the "instruction book" for the cells that make up your body.
- Researchers might study all of your genes, which is referred to as exome or genome sequencing.
- Researchers will link your genetic results with information in your electronic health record.
- You may also be re-contacted and asked to provide additional information and/or participate in related studies. Additional research options will usually require a separate IRB approved consent to ensure that the study is explained to you and you have the opportunity to ask questions.
Will I receive results?
- It is possible that researchers will identify a medical condition or genetic variant that might call for further testing, monitoring, or treatment for a specific patient.
- When the results are "medically actionable" (i.e., could be addressed through preventive measures, treatment, etc.), then the patient's physician and the patient will be notified.
- Geisinger experts are available to assist the physician and the patient with the results. Educational materials and care guidelines will be made available as needed.
- At this time, Geisinger will not return information concerning untreatable conditions.
How will my privacy be protected?
- Your sample and information will be protected through use of a special code known only to the Geisinger MyCode™ Community Health Initiative team.
- Although your sample might be shared with other researchers outside of Geisinger, they will not be given information that can be used to identify you and will not contact you.
How can I learn more?
For questions about the My Code™ Community Health Initiative or Geisinger's research efforts, contact a member of the research staff by calling toll free at 1-855-636-0019 or emailing MyCode@geisinger.edu.