This is part of a blog series from genetic counselors at the Basser Center. This was written by Jessica Ebrahimzadeh, MS, LCGC.
Thanksgiving is a day set aside to express gratitude and share a meal with loved ones. Maybe your Thursday will be filled with traditions like watching football or scouting out Black Friday deals; but did you know that Thanksgiving Day is also National Family Health History Day?
National Family History Day was specifically created to encourage families to share health information while everyone is gathered. Families can share many things such as their environment, lifestyle, and importantly, their genetics. Being aware of health concerns that affect biological relatives can help identify significant patterns that may impact you (and vice versa). Some examples of meaningful information to share can include things like high blood pressure, heart disease, diabetes, and cancer history.
Tips for collecting family health history:
- Try to collect health information for those closest to you (parents, siblings, children, grandparents, aunts/uncles, cousins)
- Ask the “elders” information, if they are willing to share.
- What ages were people diagnosed with the health condition?
- Around what ages did people die? Why?
- Did any family members have big surgeries? Why?
- Find a way to organize/document family health information (binder, word document, my family health portrait; review it annually or be sure to add new information as your family history evolves.
It’s also strongly encouraged to share genetic information with biological relatives, especially if you’ve tested positive for a gene mutation. Sharing genetic results related to an increased risk of developing cancer, such as BRCA1/2, is so important because it may allow other at risk family members to take specific actions to prevent or reduce cancer.
As a genetic counselor in the Cancer Risk Evaluation Program at Penn Medicine, part of my role is to help people navigate how to share their genetic testing results and identify the most important relatives to test. While collecting and reviewing family histories, genetic counselors try to understand family dynamics and values. Part of this process includes learning about the different types of relationships given that it shapes the communication style.
Some families with a strong connection and open communication style circulate genetic results with very little outside intervention. Other families may have more of a challenging time with distributing this information. For example, there are some circumstances when an individual may maintain a strong desire to not share their genetic results with family members. Although, more commonly, people may not share results simply because they don’t feel confident in explaining or communicating genetic information. Understandably, some people may feel genetics and risk information is too complex to explain. For others, it may be an emotional burden to have the responsibility of informing family members that they may be at risk for cancer (especially for parents or siblings). Genetic counselors can be a good resource if you’re having a hard time navigating this process. Although they cannot directly reach out to family members, they can create a plan for family communication and can provide resources to help disseminate information to at risk family members.
Tips for sharing genetic testing results:
- Genetic counselors can send you a "family letter," which includes information to help explain your genetic testing results and how it may impact the family member(s) you choose to send it to.
- Be prepared to share a copy of your genetic testing result in order for family members to have the correct testing performed.
- Men should be part of the conversation (yes – men should have BRCA1/2 testing too!).
- Find your family “kin keeper” and share your results with them to help disseminate (i.e. this is the person who maintains relationships across many family members, coordinates family functions, the family “glue”).
- If you’re thinking about sharing results with your children, click here for a booklet from FORCE and NSGC to help facilitate the process. Click here for an additional resource page.
- All families are different; respect the approach the fits best with your communication style.