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Tips for Sharing the Gift of Knowledge with Relatives

December 8, 2016

by Sue Friedmanshutterstock_503377519

Members of our community who have already had genetic testing often ask for advice on how to speak about it to their relatives. Some common barriers to testing that we hear voiced by people are:

  • concern over the cost of testing
  • access to genetics experts
  • family communication challenges

With the holidays coming, here are some tips to consider when sharing the gift of knowledge with relatives.

Concern over the cost of testing

Concern over cost is the most frequently cited obstacle to genetic testing. In fact, the cost of genetic testing has decreased over the last several years. This is particularly true for someone who comes from a family with a mutation that has already been identified. In that case family members can be tested for that specific gene mutation; generally this type of test—called single-site testing—is much cheaper than a multi-gene panel.

  • Tip: In most cases the cost of genetic testing for cancer risk is covered by insurance. Currently the Affordable Care Act (ACA) requires insurance companies to pay for genetic testing with no out-of-pocket costs for certain high-risk women. Unfortunately, this law excludes panel testing and genetic testing for men. Further, the incoming administration has stated plans for overturning the ACA. You can read our previous blog about this topic.
  • Tip: FORCE maintains a list of companies that perform single-site genetic testing.
  • Tip: For the men in your family or anyone whose insurance won’t pay for testing, Color Genomics has launched a $50 panel test for people with a known mutation in the family.

Finding a genetic expert

FORCE recommends that anyone considering cancer genetic testing consult with a genetics expert before and after testing. A genetics expert can explain the benefits and limitations of testing, explain laws and protections that apply to coverage for testing, genetic discrimination, and privacy, and help your relatives make informed decisions about testing. These experts will interpret the test results and explain what the results mean for the health of your relatives.

  • Tip: Visit our Finding a Genetics Expert page to locate a genetics professional for your relative.
  • Tip: Share our Ask A Genetics Expert Helpline number at 866-288-7475, ext. 704 with your relatives. They can ask general questions and get further assistance in locating a genetics expert in their area.

Family communication

The best way to talk to your relatives depends on the relationship you have with that person. If you are unsure of which family member you should speak with, genetic experts can help you determine which relatives may be at risk for hereditary cancer or for having a mutated gene.

  • Tip: To facilitate conversation with family, FORCE has developed a worksheet, a family medical history chart, and a sample letter to help you reach relatives and prepare your conversation.
  • Tip: If your relative is looking for additional support, guidance, or a sympathetic peer who has gone through the genetic testing experience, FORCE’s Peer Navigation Program can provide expert reviewed sources and 1:1 personalized peer support.
  • Tip: FORCE’s Should I Get Genetic Testing? page has links to the resources most frequently requested by people considering genetic testing.
  • Read the results from our survey on experiences with sharing family cancer history and genetic test results with relatives.
  • Tip: Myriad Genetics has a Family History Tool that allows you to enter and share your family history with relatives and wallet cards for sharing test results with relatives and health care providers.
  • You can find additional resources for sharing information with family members on the FORCE website.
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