Asking Family Members to Get Testing to Help Classify Your Variant
The exact process for asking family members to provide samples and help classify a variant of uncertain significance may depend on the clinical laboratory or research study working on the variant. Different laboratories have different protocols that they need to follow for sample collection based on their sample requirements, standard practices, and local regulations. Once you have identified a clinical or research laboratory that is willing to help you classify your variant, ask them for details about their process for collecting samples from your family members.
Please see below for an example script and template letters. These may help you approach your relatives and ask them to get variant testing to help you classify your variant.
“Hello (family member’s name)______. This is your (Cousin/Niece/Nephew/etc.) (your name)____________. We talked a few days ago about how I have been looking at our family history of (cancer/heart disease/immunodeficiency/etc.). I have had genetic testing for this disease, and I was found to have a new genetic variant that is specific to our family. For this reason, the doctors cannot say “Yes, it causes this disease.” in our family, but they also cannot say “No, it doesn’t cause the disease” in our family.
I have contacted (____ Research Study/______Laboratory), and they are willing to test family members that may also have this variant to see if it is associated with disease or not. I know that you (do/do not) have (_________ disease), but because of how you are related to me, you may have the variant I am trying to better understand.
It would mean a lot to me if you could help me to classify our family’s variant. Would you be interested in helping me and other family members? If so, would it be okay if I have (____ Research Study/______Laboratory) contact you to ask about collecting a (saliva/blood) sample?”
General Template Letter: This is a general template letter that you can send to relatives asking them to get testing for your VUS at any laboratory.
University of Washington Family Variant Classification Test – Template Letter for Relatives: This is a template letter you can send to relatives asking them to get VUS testing through the University of Washington Family Variant Classification test.