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College of
Health Sciences

MyCode Frequently Asked Questions

What kind of research does MyCode do?

The 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 into clinical care
● Researching and learning about the best ways to share medically actionable genetic results with patient-participants and to facilitate the sharing of that information with other potentially affected family members.

Who is Geisinger collaborating with on MyCode?

We collaborate (or will collaborate) with scientific partners throughout the project, which is expected to last for many years. Our main scientific collaborator for sequencing DNA is the Regeneron Genetics Center, a biopharmaceutical company in Tarrytown, N.Y. You can see some of the scientific work we’ve published with Regeneron here.

Is there a 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 a genetic variant that increases 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?

Have a sample for MyCode drawn during your next blood draw. Visit a Geisinger lab to donate a blood sample at your convenience. You can also request a free saliva sample kit to be sent to your home.

Will you tell me what you find in my genes?

Yes, 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.

Is MyCode the same as clinical genetic testing? 

MyCode is not a replacement for seeing your doctor or for clinical genetic testing. 

MyCode is a research program to find genetic contributions to illness, to advance knowledge of genomic medicine and to provide new and improved treatments — and even possibly future cures — for disease. 

MyCode participants who are found to have genetic variants associated with certain illnesses will be notified. However, MyCode isn’t 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 testing, screening and treatment. 

I had genetic testing before, and know that I have a genetic risk, but I didn’t get a result from MyCode. Why not?

Part of our process for returning results includes identifying if a patient is already aware of their genetic result. When this happens, we will send you a letter or MyChart message to let you know, but we won’t get a new genetic test report. Typically, a genetic test report will not be added to your health record from the MyCode study. A no-cost genetic counseling visit is still offered to discuss your risks and review ongoing or next steps.

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 privacy protections as all 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 information without your name or any other possible identifier attached to it.

What if I haven't heard back from MyCode?

Only about 2 – 3% 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 who 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 between the collection of your blood sample and the sequencing of your DNA. 

Additionally, our understanding of how genetics can affect a person’s health is always growing. As a result, we may add genes and conditions to our list for return. When we do, we re-examine all samples in MyCode. This also means there’s no concrete timeline from when a participant shares a sample to when they may receive a result. 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.

If you have questions, before or after signing up, email or call 844-798-1687.

If you received a genetic variant result through MyCode, you can contact us at 844-250-8031.
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