Knowing more about your family can help you find more information about your variant. This page will help you get started gathering information from your immediate family. Eventually knowing enough about your family may allow family analysis to help classify your variant. Your variant will only be found in people biologically related to you; it will not be found in family related by adoption or by marriage. We recommend you contact the laboratory where your testing was done to determine if you qualify and find out more about the laboratory specific process before contacting relatives. There are several clinical laboratories involved in classifying variants.
Start with What You Already Know
Begin with yourself
List your own name and disease that you are interested in. Write down your immediate family members to the best of your ability
Organize Information About Your Immediate Family
- List your parents and their information (if known). Note if they have the disease or any potentially disease related conditions that you are aware of. For example, colon polyps are related to colon cancer. Note if any of them have had genetic testing and the results of that testing.
- List all your biological siblings and half-siblings. Note any health information related to your disease you are aware of.
- List your own children, and their information.
- List your nieces and nephews and their information.
- Remember that your variant will only be found in people biologically related to you. It will not be found in family members who are related by adoption or by marriage.
Add What You Know About Your Extended Family
- Try to start with your grandparents. If you already know that you’ll be focusing on one side of the family, you can start there. But if you don’t know, researching both paternal (your fathers) and maternal (your mothers) sides of your family will be helpful. Note your grandparents’ health information that you are aware of. If you are not sure make a note look again later.
- Write down all children of your grandparents (your aunts and uncles). Once again, note any relevant health information, if you can. Make notes about what you need to find out more about.
- Write down all the children of your aunts and uncles that you know (your first cousins), and make notes about what you need to find out more about.
- If you know further extended family already, continue to expand your family tree as far as you can.
Talking with Your Family
If they are alive, your parents and other older relatives can be the best sources of information about their own health histories. They are also likely to be able to help you expanding your family tree.
This process involves contacting family members and asking for medical information and family relationships, both of which can be intensely personal. While the information you’re gathering is important to you, it’s also important to be sensitive to others feelings and concerns.
Record and confirm basic facts.
Because family relationships can be confusing, it may be helpful to first organize who’s related to and descended from whom. If you have access to an existing family tree, you can more quickly and easily understand who your relatives are talking about, even if it is incomplete. For instance, a grandmother might be referring to ‘one of Lisa’s children,’ and it can be useful to find exactly who she is talking about in your diagram or draw a new symbol for that person. Try to ask clear questions and repeat information to make sure you are getting the right facts about the right person. Sometimes you can show your family tree diagram to your relatives to make sure the information you have is correct.
Contact your living parents and siblings.
- Set some time aside for each interview. Conversations with relatives may be as short as 10 minutes or more than an hour, so plan accordingly. Confirm the histories you wrote with open-ended questions. The person you are interviewing may not know everybody’s medical history or may not have all the information and may want to go back to their records to find out more. When asking about personal health information it is best to start with open-ended questions such as “Would you be willing to tell me about any cancer diagnosis you may have had” or “Tell me the story of how you were diagnosed with ______” rather than asking specific questions like “How old were you when you were diagnosed with breast cancer.”
- After asking open ended questions and confirming the information you have about an individual by reading it back to them. Ask your parents and siblings if they would like to share additional information about themselves or have additional information about other family members you may not be able to contact. You can ask your parents to give you information about their parents, grandparents, their first cousins, aunts and uncles (your grand-parents, great-grandparents, first cousins once removed, and grand-aunts and -uncles, respectively).
- Ask your parents if they have contact information for relatives. Ask specifically if they know of relatives who do genealogy or family history as a hobby. Also ask specifically about people they felt less sure about. For example, if they don’t know of all your first cousins, ask if they know how to contact their siblings (your aunts or uncles).