What is the MyCode Community Health Initiative?
It is a precision medicine project enrolling patients at Geisinger locations in Pennsylvania. MyCode uses a systemwide biobank to store blood and other samples for use in research — particularly genetic research — by Geisinger and its collaborators.
What kind of research does MyCode do?
The main focus of research for the MyCode Community Health Initiative centers around:
- Finding and confirming new disease-causing variants (changes) in people’s genes
- Searching for changes in genes that protect against disease
- Targeting new drug development
- Translating the results we get into clinical care
- Researching and learning what are the best ways to share medically-actionable genetic results with patient-participants and, then, how to facilitate the sharing of that information with other potentially affected family members.
Who is Geisinger collaborating with on MyCode?
We are collaborating (or will collaborate) with different scientific partners throughout the project, which is expected to last for many years. Currently, our main scientific collaborator for sequencing the DNA of MyCode participants is the Regeneron Genetics Center, a biopharmaceutical company in Tarrytown, N.Y. Our collaboration with Regeneron is known as the DiscovEHR Project
. To see some of the scientific work we have published with Regeneron, see here
How do I benefit from participating?
MyCode analyzes the DNA of patient-participants who sign up. Our goal is to give every Geisinger patient the opportunity to participate. With such a large body of DNA data, we hope to find ways to make healthcare better — for you, your family, your community and people around the world. In fact, most MyCode participants will not receive a direct benefit. However, some patient-participants have benefitted directly by discovering they carry genetic variants that could affect their health. Some MyCode participants benefit directly by discovering they carry genetic variants that could affect their health, but everybody’s participation will help us do groundbreaking research benefiting the health of current and future generations.
Does it cost to participate?
No. There are no charges to you or your insurance for participating. Participation costs are covered by the project. If we find that you carry genetic variants that increase your risk for disease and you need follow-up care or treatment, that treatment would be charged to you and/or your insurer just as any other healthcare would.
I consented to enroll in MyCode. What do I do now?
Make sure you have a blood sample for MyCode drawn during your next routine exam involving a blood draw. Or, consider visiting a Geisinger lab to donate a blood sample at your convenience.
Will you tell me what you find in my genes?
Yes, if it is related directly to your health. If we find genetic variants indicating you have a higher risk for one of the conditions or diseases on our approved list — such as certain types of cancer, dangerously high cholesterol or various forms of heart disease — we will inform you and your doctor and place the information in your medical record.
What about privacy?
Any information related to your MyCode samples, including genetic information, that might get into your medical record is treated with the same level of privacy protections as all of your Geisinger health information. The MyCode Community Health Initiative also has an NIH Certificate of Confidentiality. On the research side, we only share with third-party researchers and collaborators de-identified information; that is, information without your name or any other possible identifier attached to it.
What if I haven't heard back from MyCode?
Only about 2 to 4 percent of all MyCode participants will be found to have disease-causing genetic variants. That means most people will not hear back from us. Even for those that do, it’s worth remembering that MyCode is a research project with very different timelines from a clinical testing program. In a research project, there can be an extended time period between the collection of your blood sample and the sequencing of your DNA. If you don’t hear anything, it means one of two things: Either your results haven’t been processed yet or we didn’t find anything in your DNA to report back to you. We will only contact you if we find something.
Can I withdraw from MyCode?
Yes. You may withdraw from MyCode at any time by contacting the MyCode staff. Geisinger and its collaborators will still have access to and will be able to continue using any research already generated from your samples, but we will not collect any more samples from you, and we will not include information from your samples in any new studies.
What if I still have questions?
If you have questions, before or after signing up, just email JoinMyCode@geisinger.edu
or call (toll free) 844-798-1687.
Note: MyCode is not a replacement for seeing your doctor. MyCode is a research program whose purpose is to seek and find genetic contribution to illness; to advance knowledge of genomic medicine; and to provide new and improved treatments — and even possibly future cures — for disease. All MyCode participants who are found to have gene mutations associated with certain illnesses will be notified of this information. However, MyCode is not a clinical program designed to monitor your individual care. All patients, whether MyCode participants or not, should consult directly with their doctors or other regular care providers if they have any concerns related to family history or genetic illnesses to get appropriate screening and treatment.