How to talk with family about genetic counseling
Outside of a family gathering, how often do you see your extended family? We learn to value the time we have with the loved ones we don’t see as often due to busy schedules, distance, and so forth. It’s a time where families can catch up on each other's lives.
What you may not realize is this is also a great opportunity to discuss and learn about your family’s medical history. Knowing your medical family history can be helpful for your own health as people with certain genetic changes may have a higher risk for certain health issues. Knowing this kind of information can help you and your family be proactive about potential health issues such as diabetes, heart disease, cancer, and neurological diseases.
To better prepare you for these kinds of health conversations with loved ones, we asked the genetic counseling team at UI Hospitals & Clinics to answer some of the more common questions surrounding their work.
What should people know about genetic counseling?
Genetic counseling can provide a person or family with information on how certain health conditions can be inherited (passed on through the family). Genetic counseling is available for many medical specialties and conditions, including cancer, cardiology, prenatal, neurology, nephrology, pediatrics and more. Many times, genetic counselors will discuss genetic testing options, although testing is not required to learn more about your risk for certain conditions. Genetic counseling can also involve a discussion about the impact of hereditary conditions on their life, medical care, and family. Genetic counselors are members of your health care team and collaborate with other providers to relay how genetic information can impact your care.
Why is it a good idea to talk about the risk of genetic diseases with family?
Family history is an important tool that health providers use to assist in identifying whether someone may have an increased risk of developing a certain disease. A complete family history includes at least three generations, which is why discussing family health information with your extended relatives—such as aunts or uncles—during family gatherings may reveal previously unknown information about past generations of the family.
It can be an awkward subject. Do you have any tips for how to navigate that conversation with family members?
There is no need for a formal family meeting if you aren’t comfortable with this idea. You can start off with small details and individual conversations and work your way to the most important information over time as you feel more comfortable.
For example, you could start by talking about your own information and asking them questions. “I’ve been tripping and falling lately. Have you noticed anything like this?” Providing accurate information is very important but you may not need to share everything all at once. Being open about genetic conditions with family members—particularly if they are at risk to develop the condition in the future—can benefit everyone’s understanding of their own health. It is particularly important to be open and honest with children—in an age-appropriate way—about genetic conditions in the family to help with healthy adjustment to the information.
If you have a positive genetic test result you want to share with family members, a genetic counselor can provide a family letter. This allows you to pass along the information without having to find the right words or remember all the scientific details.
Every disease is different, right? Are there any general questions that you should ask when talking with family members?
There certainly can be a lot of questions you could ask and that may feel overwhelming! Here are some questions to get you started:
Do you know of any health issues that run in our family?
Do you know if any family members have symptoms or conditions that doctors cannot find a cause for? For example: “Cousin Lou has high cholesterol even though he eats healthy and works out 5 days a week.”
Do any family members have conditions that started younger than expected for that condition? For example: Cancer diagnosed in someone under age 50, children with deafness, children with cataracts or progressive vision loss, heart attacks at young ages.
Writing down the information you learn (I.e., which relatives, what condition, age they were diagnosed) can be a way for you and your family to see patterns and share this information with your doctor or genetic counselor.
If someone is concerned about their risk after talking with their family, what’s an ideal next step?
Speak with your doctor about your concerns. It can be tempting to look online for answers; however, there can be a lot of information to sort through and not all of it will apply to you and your family. Your doctor may recommend any or all of the following:
Changes to your environment, lifestyle, and diet that can reduce your risk
Earlier and more frequent medical appointments or screenings
Genetic counseling to further explore your family history, assess risks and discuss possible testing options
What type of questions will a genetic counselor ask?
The types of questions a genetic counselor may ask during an appointment can vary depending on what type of genetic counselor you are seeing. During an appointment a genetic counselor will typically discuss the reason for the visit and address any questions you may have. They will also ask you questions about your personal and family health history. The genetic counselor will ask questions about your family health history that are related to the reason you were referred. It can be helpful to discuss your family health history with relatives before the appointment. The genetic counselor will typically focus on the health history of your parents, grandparents, siblings, aunts, uncles, and your children. Don’t worry if you do not have all of the information. If you or any of your relatives have had genetic testing related to the reason you were referred, it can be helpful to bring a copy of the genetic test results if available.
Genetic counselors specializing in cancer, cardiology, nephrology, neurology, otolaryngology, women’s health, and precision medicine all contributed to these responses.