Frequently Asked Questions (FAQs)

How does the GENERATE Study help people?
The study helps families of pancreatic cancer patients get genetic testing. Families may have barriers to testing. These could be:

  • A lot of travel to get testing
  • Not knowing that cancer risk can be passed down through the family. This means that family members could be at risk.
  • The cost of genetic services and/or testing

To help with these barriers, the study:

  • Provides genetic education and testing in people’s homes. This happens through the internet and by mailing in a saliva sample.
  • Lets a person skip an in-person genetic session before getting genetic testing
  • Provides genetic testing at no cost to participants in the study
  • Provides information on local genetic counseling and support services to everyone in the study

How much does it cost to be in the GENERATE Study?
There is no cost to be in this study. GENERATE offers genetic testing at no cost to participants in the study.

How will you protect my privacy and personal information?
A federal law called HIPAA protects your medical information. The technology used in this study is HIPAA compliant.

We take care to protect your personal information. Study data is in a database protected by a password. The database is on a secure server at Dana-Farber Cancer Institute that only study staff can get to.

Hard copies of the study data will be kept in locked file cabinets that only study staff can get to.

Can I leave the GENERATE Study after I have joined?
Yes, you can leave the study at any time.

What should I do if I have technical issues during the study?
If you have any issues or questions:

Is the GENERATE Study linked to any companies? 
GENERATE uses a company called Color Genomics. Color is a certified genetic testing company. 

Will the GENERATE Study look at all of my genes?
Color’s Hereditary Cancer Test looks at 30 genes that are related to common cancers that can be passed down in a family. This includes breast, ovarian, colorectal, and prostate cancer.

Is genetic counseling part of the study?
Yes, genetic counselors (GCs) are professionals who have education in genetics and counseling. They help people with their genetic health.

Everyone in the study can ask GCs questions and can talk to a GC by phone before and after their genetic test. If someone wants to meet with a GC in person, we can give information about local GCs.

What genes is the GENERATE Study interested in?
The study is recruiting families with a germline genetic mutation in one of the following: APC, ATM, BRCA1, BRCA2, CDKN2A, EPCAM, MLH1, MSH2, MSH6, PALB2, PMS2, STK11 or TP53.

 

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