Finding and Connecting with Distant Relatives That Might Have Your Variant

Start with the People You Know

Previous pages covered discussing your health history and family structure with people you already know. You may need this information to find more distant relatives who have your variant. Start with a list of a list of the names of your ancestors and any of their descendants that you already know about.

Expanding Downwards

Talking with Living Relatives to Find Additional Relatives

1. Contacting an aunt or uncle (or great-aunt, great-uncle) can be useful for learning about all your cousins that are descended from them.
2. Ask if they have children or grandchildren. Your parents and grandparents might not have known everything about the younger relatives, of their siblings or cousins, so some of your living relatives might have been overlooked.
3. Once again, ask for contact information for other relatives, especially as you research more distant relatives. Many people won’t share health information about others, either due to its personal nature or simply because they don’t know, but they might be willing to help you get contact information so you can ask directly.
4. Many of your relatives who have your variant may not have cancer. This is very important to know. Try to build a complete pedigree of everyone with and without cancer.

Using Online Social Networking Sites to Find Additional Relatives

As always, the best place to start is with the people you know. If you do not already have one, start a Facebook account. There are other social networking sites that could also be useful, such as LinkedIn. Since Facebook is the most common social networking site in the United States, we will use this as an example.

• Friend your known relatives on Facebook
• Let them know who you are and what you are doing with a post like this:
  

  Hello, [Aunt Barbara], it’s me, [Amelia], your [grand-niece]. You know that I was recently diagnosed with [breast cancer]. I am wondering if others in our family have had similar diseases. Could I ask you some questions about our family?

• After they respond, let them know who you are and what you are doing with a post like this:
  

  I’m working to see if there are other people with [breast cancer] on our family tree. First I need to make sure that the tree is complete. Do you know of other family members that have [breast] cancer or other cancers? Can you remind me of your children’s names? Could you let me know and help put me in contact with them? Thank you, [Amelia].

• If you have a relative’s name, but not a good contact, you could search on Facebook for people with the same names.
• If your relatives have common names, there might be quite a few (unrelated) people that have similar names. Try to see if there is any other information that might distinguish your relatives from other people with the same name. For example, if several people all have the same name, your cousin is likely the one whose friends include other people you know in your family.
• Once you think you have found a cousin, you could send them a message to see if they will connect with you. Here is an example of a message you might send:
  

  Hello, my name is [Amelia]. We don’t know each other well, but we’re [cousins]. Your [grandmother Sara] was my [grandmother’s sister]. Could I contact you to find out more about our family?

• After they respond, let them know who you are and what you are doing with a post like this:
  

  I’m trying to retrace my family tree to find out if anyone has [breast cancer], like me. Would you be able to help me with your part of family? Also, if you or any family members that you know of have or have had [breast cancer] that you can share, please let me know and help put me in contact with them. Reply or email me at [amelia@ameliab.com].

  Thank you, [Amelia].

Another way to find distant relatives is through online genealogy software. There are family trees and message boards on Ancestry.com, FamilySearch.org, and many other genealogy websites that help you connect to people researching the same lines. If you can find an ancestor that you are interested in, then you can post a query to see who else might be interested in the same person.

Don’t Forget Low-Tech

While many of your relatives may be on social networking sites, you may need to try alternate methods of communication for others. If you can get somebody’s phone number or physical address, you can call or write them.

If you can’t get contact information:

When trying to get in contact with a distant relative, you may not be able to find family members who know their contact information. There are other options. Some phone numbers and addresses are listed publicly. People Search Engines can sometimes provide you with a phone number or address for someone given only their name. However as with the Facebook section above, if their name is common, make sure they’re really the relative you’re looking for.

Resources

After you have identified a relative, you can ask them to help you expand your family tree. You can let them know about your attempt to classify your VUS just like you did with your other relatives.

If a someone mentions a living relative you have not heard of before, try to get in contact with them. They will know more about their medical history and their closest relatives than a second-hand source.

Once you are in contact with a given relative, make sure you take down the following information:

• Medical information related to your disease, including age at diagnosis.
• Any genetic testing that they may have already had.
• Information about other family that you might not know about.