Talking with Family Members
Communicate through FamilyCONNECT
Why is FamilyConnect needed?
You may have lost touch with or are unable or uncomfortable communicating with some or all of your relatives. Informing such relatives of a family diagnosis of Lynch syndrome may seem unnecessary or likely to cause excessive worry. But studies have shown that genetic test results are not as commonly shared with at-risk relatives as they should be . So we have arranged a process through which you can allow or delegate the task of communicating to us, by means of the online tool, described below.
How does FamilyConnect work?
Over the past two years, we have been building FamilyConnect. FamilyConnect is a simple online tool for sharing your genetic test results and information about genetic risk with your family. Relatives can then arrange to get tested themselves, armed with your genetic test result and other information they can share with their medical provider. Through FamilyConnect you can select which family members you would like to contact by providing their email address (or phone or mailing address). With your permission or “informed consent” FamilyConnect will securely communicate with your relatives and give them the opportunity to learn about the genetic risk that runs in the family and to receive a copy of your genetic test results (genetic testing labs need this specific information in order to limit their testing to this already known “family mutation” as opposed to shotgun screening of all the genes involved). If you don’t have contact information handy regarding a given relative or relatives, you may at least have a relative that is a family historian/genealogist that keeps in touch with the family. You may provide their email or phone number so they can help reach out to extended family members. Briefly stated, this online tool works and depends on you providing your consent to contact relatives, as well as their contact information.
How can FamilyConnect help?
Through FamilyCONNECT, family members are able to learn more about their familial risk. This allows them to make more informed decisions regarding genetic testing and preventative screening. Regular screening can help detect a cancer early or avoid cancer in the first place. However, FamilyCONNECT only attempts to inform relatives regarding Lynch syndrome and appropriate genetic testing protocol. It does not enforce genetic testing. The ultimate decision is up to your relatives and if they have any further questions they can seek a genetic counselor’s help.
Works Cited
1Daly, M. B., Montgomery, S., Bingler, R., & Ruth, K. (2016). Communicating genetic testresults within the family: Is it lost in translation? A survey of relatives in the randomized six-step study. Fam Cancer, 15(4), 697-706.
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