There are national guidelines for genetic counseling and testing for inherited mutations linked to cancer. Experts recommend all people diagnosed with a type of pancreatic cancer known as diagnosed at any age have genetic counseling and testing.

Other people who may benefit from genetic counseling and testing

You may benefit from additional genetic counseling and expanded genetic testing if you had genetic testing in the past, you tested negative, and the following applies to you:

you had a test that only looked for one or a few genes, or
you had genetic testing before 2014. Genetic testing has improved, and laboratories can now find gene mutations that may have previously been missed.

Pancreatic cancer survivors and those in treatment should speak with a genetics expert to see if testing is right for them.

Guidelines for genetic testing for relatives of people who have been diagnosed with pancreatic cancer

Genetic counseling and testing is also recommended for anyone with a first-degree or second-degree relative who has been diagnosed with pancreatic at any age.

See our sections Testing Guidelines by Cancer Type and Genetic Testing for People Who Have Never Been Diagnosed with Cancer for additional guideline information.

Last updated February 02, 2022

Find Experts

The following resources can help you locate a genetics expert near you or via telehealth.

Finding genetics experts

The National Society of Genetic Counselor website has a search tool for finding a genetic counselor by specialty and location or via telehealth.
InformedDNA is a network of board-certified genetic counselors providing this service by telephone. They can also help you find a qualified expert in your area for face-to-face genetic counseling if that is your preference.
JScreen is a national program based out of Emory University that provides low-cost at-home genetic counseling and testing with financial assistance available.
Grey Genetics provides access to genetic counselors who offer genetic counseling by telephone.
The Genetic Support Foundation offers genetic counseling with board-certified genetic counselors.

Related experts

Genetics clinics

The American College of Medical Genetics website has a tool to find genetics clinics by location and specialty.

Other ways to find experts

Register for the FORCE Message Boards and post on the Find a Specialist board to connect with other people who share your situation.
The National Cancer Institute (NCI)-designated comprehensive cancer centers have genetic counselors who specialize in cancer.
FORCE's toll-free helpline at: 866-288-RISK, ext. 704 will connect you with a volunteer board-certified genetic counselor who can help you find a genetics expert near you.

updated: 04/06/2023

Get Support

The following organizations offer peer support services for people with or at high risk for pancreatic cancer:

FORCE peer support
- Our Message Boards allow people to connect with others who share their situation. Once registered, you can post on the Diagnosed With Cancer board to connect with other people who have been diagnosed.
- Peer Navigation Program will match you with a volunteer who shares your mutation and situation.
- Private Facebook Group
- Virtual and in-person support meetings
- Join a Zoom community group meeting.
  - LGBTQIA
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PanCAN
Let's Win PC
The Healing NET Foundation is a nonprofit organization for people with neuroendocrine cancers.
The Neuroendocrine Cancer Awareness Network (NCAN) is a non-profit organization dedicated to raising awareness of neuroendocrine cancer and providing support for caregivers and people with NETs.

updated: 08/23/2022

Paying For Care

Insurance coverage for genetic counseling and testing

Most health plans cover genetic counseling and testing for inherited gene mutations linked to cancer in people who meet the national guidelines. The cost of testing and your out-of-pocket charges may vary based on several factors.

People who are denied coverage for genetic testing can file an appeal (FORCE has sample appeal letters). Your healthcare provider can work with your insurance company and help you file an appeal if needed. Low cost testing may be available for $250 or less. Learn more about coverage for genetic counseling and testing here.

If you need information about finding an insurance plan, watch our video: Choosing Wisely: How to Pick Insurance Plans.

testing under the Affordable Care Act

Under the Affordable Care Act (ACA), insurance companies must pay for both genetic counseling and testing with no out-of-pocket costs for women who meet certain criteria. The ACA regulations are limited to testing for and only and do not cover genetic counseling or testing in all situations. You can learn more about testing under the ACA here.

Medicare and Medicaid coverage of genetic testing

Genetic counseling and testing is typically covered by Medicare for people already diagnosed with cancer who are in treatment or for whom test results may affect their care. Most state Medicaid programs cover genetic testing for and mutations for people who meet requirements, which vary by state. You can read more about Medicare and Medicaid coverage of genetic testing here.

Financial assistance or low cost genetic testing

JScreen is a national program based out of Emory University that provides low-cost at-home genetic counseling and testing with financial assistance available. Many laboratories offer low-cost genetic testing or financial assistance programs. Programs vary, so if you are not eligible for assistance through one lab, consider contacting other labs to see if you qualify .

updated: 03/16/2023