It's no secret that eating a healthy diet, exercising and getting plenty of rest is essential in reducing your risk of developing certain illnesses or diseases. But, did you know your family health history could also be a helpful piece of your well-being puzzle? This vital ancestral information could help reduce your risk of developing health problems down the road. For this reason, and in honor of National Family History Day, we asked Rebecca Nelson, MS, CGC, lead genetics counselor, Parkview Cancer Institute, to expand on the importance of gathering your family health history and the best ways to collect it.
What is a family health history?
Your family health history is a compilation of your blood relatives' medical issues. Think of the chronic illnesses that your family members have experienced. Those ailments may be something they were born with, like a cleft lip or something that happened during their lifetime, like a stroke. When your health team asks about your family history, think of your first-, second- and third-degree relatives, both living and deceased. To do that, let's define what the different degrees are:
- first-degree relatives: The first includes your children, parents, brothers and sisters.
- second-degree relatives: The second includes aunts, uncles, grandparents, grandchildren, nieces, nephews and half-siblings.
- third-degree relatives: The third includes cousins, great aunts, great uncles and great grandparents.
Why is knowing your family health history important?
Your family health history is used to predict future health risks. Knowledge of your family member's health issues can help to shape your medical care. Based on this family history, you may need to see specialists, have additional tests or start standard screening at an earlier age. Your family history may also help your health care team diagnosis an illness quickly, bypassing a longer diagnostic journey.
Couples interested in conceiving, or expectant parents, are often asked about their family health history to predict any possible complications with the pregnancy or baby. As stated above, this may lead to referrals to specialists, additional testing during the pregnancy or additional evaluations of the baby.
What are the different ways to collect a family health history?
The best thing to do is to ask your relatives questions and write everything down. If you're anything like me, you're running out of things to talk about on the family virtual calls. So why not start asking about family history? If you're not feeling the virtual family visits, begin with the family member you speak with the most or the one who is interested in genealogy (trust me, almost every family has a record keeper). If you need help keeping track of everything, the surgeon general has an online tool called My Family Health Portrait, where you can collect, save and share your family health information.
If you don't speak with your relatives, you can send an email, Facebook message or letter asking for information about their health and any other family information they may know. There is a website, Kintalk, out of UC San Francisco, which stores family health information and allows family members to post updates and share results. Think of it as a more secure social media group that helps families with a known hereditary cancer mutation.
Additionally, some relatives may be hesitant to share this type of information. It is important to remember that in the past, people did not discuss their health history. It may have been taboo or just seen as impolite. Besides, we previously did not know that family history could be used to predict disease, so there was no reason to share one's personal health information. So, if your family member seems reluctant to discuss this type of information, ask them why and be sure to share your motivation and reasons for investigating.
What are the most important questions to ask regarding family health history?
The two most important questions I recommend asking every relative are:
1.What chronic illnesses did they have?
2.How old were they when diagnosed?
The more specific the answers, the better. For example, there is a difference in recommendations we would make for someone who reports a mother with breast cancer after menopause and someone who reports their mother had triple-negative breast cancer at age 55. That being said, we understand this can be incredibly difficult information to collect, so if you have an approximate age range, or if you remember they were diagnosed after retirement (and therefore might have been older than 65), we'll take it. A little information is better than none.
You might also ask if a family member was diagnosed with multiple illnesses. Were they related or unrelated? In oncology, when a family member has had more than one cancer, it is helpful to know if this was a metastasis (spread), a recurrence or brand new cancer. If there are still unknowns or disagreements in your family history, your relative's treatment can provide clues about a diagnosis. Did they have surgery, did they take medication, how often did they have to go back to their doctor?
Finally, asking if any relatives have had genetic testing could benefit your search. If so, what were their results? As genetic testing has improved rapidly, knowing an approximate year of testing can help your health care team determine if this testing is sufficient or if it is now out of date. It's also worth mentioning that there are many specifics collected in the preconception and prenatal period. The March of Dimes has an excellent worksheet to help gather this information.
What actions could someone take upon discovering a family history of an illness or disease?
I'm a cancer genetic counselor, so I can genuinely only answer this question for a family history of cancer. Still, I would imagine the process is similar for other diseases as well. So, let's dive in. There are three main actions someone can take based on their family history, but let's use cancer as an example:
- Identify the risk: This means collect your family history and share it with your doctor. Your provider may refer you to an assessment program to discuss your family history of cancer. Parkview's High Risk and Cancer Risk Reduction program will help you determine if you should see a high-risk specialist or if you would benefit from genetic counseling. For more information or to request an appointment, please call 833-724-8326.
- Undergo genetic counseling and testing (if applicable): Genetic counseling is a conversation. A genetic counselor will analyze your family history to determine if you would qualify for genetic testing through insurance or if you would have to pay for it out of pocket. Genetic testing is not for everyone, which is why we also discuss the benefits, risks and limitations of this testing to determine if this type of testing is right for you.
- Personalize your screening and risk reduction options: We can modify or enhance the standard screening recommendations based on your family history and/or genetic testing results. This may mean starting screening at a younger age than usual or using more advanced technology. People with certain high risks for cancer, such as breast, ovarian or uterine cancer, may choose to have surgery to remove those organs and lower their risks. People can also make lifestyle changes to reduce cancer risks. This could include changes in diet, increasing exercise and reducing risky behaviors like smoking or drinking. Your doctor can also recommend medications that could reduce your risks for certain types of cancer.
How can someone obtain answers if they don’t have access to their family’s health history?
This happens quite frequently, and we have many options to help work around a limited family history due to little contact, deaths in the family or adoption. If a relative has passed away, you can access death records, which will list the cause of death. When collecting health history, we want to know more than just the cause of death, but in this case, it’s a good start. Each state and county have a slightly different way to access these records. For relatives who have passed in Indiana, you can start on IN.gov.
Individuals looking for answers can also undergo genetic testing, even if they don't qualify through insurance. A genetic counselor can help identify the best testing option based on what you want to know and understand its results. At-home genetic tests are not recommended to answer these health questions as they only scratch the surface of genetic risk factors and are typically not going to change your medical plan. Additionally, at-home tests do not have the same quality as medical tests, so any genetic risk factor found through an at-home kit will need to be confirmed through testing with a genetic counselor.
Final thoughts
While we focus so much on family health history, know that most diseases are not genetic. This can be both good and bad. If you have a family history of cancer, diabetes or Alzheimer's, you should be vigilant but understand that you are not destined to be diagnosed. On the flip side, you can be diagnosed with a disease without having a family history. Approximately 65% of all cancers are due to chance rather than something running in the family. This means you should follow screening recommendations, even if you do not have a family history.
Helpful resources
Parkview's High Risk and Cancer Risk Reduction program
IN.gov (Indiana Death Certificates)
