Buzz
I undergo a colonoscopy every two to three years to check for colorectal cancer, a schedule much stricter than the recommendations from the U.S. Preventive Services Task Force. They suggest adults aged 45 and above take non-invasive stool tests every 1-3 years and a colonoscopy only once every decade.
My frequent screenings are due to a family history of colon cancer, which ranks as the third most common and deadliest cancer among men and women in the U.S. The goal of these regular tests is to detect any potential colorectal cancer early enough for effective treatment.
When completing medical forms, there’s typically a section dedicated to listing familial illnesses, the relatives affected, and the ages at which they were diagnosed.
Physicians rely on this data to establish appropriate screening schedules for serious conditions such as cancer and heart disease as we age. It’s equally valuable for younger individuals. “If you’re aware of a significant family history of obesity, diabetes, or heart disease,” noted Dr. Jen Brull, a board member of the American Academy of Family Physicians, “you can guide [patients] on steps to avoid these issues in their own lives.”
However, many of us don’t have this information readily available.
In some families, discussing illnesses might be taboo. Others may face challenges like adoption, relatives living overseas, or strained relationships. You might also struggle to recall specifics, like how old Grandma was when she was diagnosed with the condition that affected her mobility when you were a child. Was it multiple sclerosis? Lupus? Or simply arthritis?
Creating a detailed family medical history is a powerful way to tailor your healthcare, enabling you and your doctor to make well-informed decisions about your risks and prevention strategies. If you have children, this is also crucial information to share with them.
While it sounds straightforward, compiling this history can be challenging. Here are some tips and tools to help you begin.
What details should a family medical history include?
According to the American Medical Association (AMA), an accurate family history should include the following details about yourself and your first-, second-, and third-degree relatives (such as grandparents, parents, their siblings, and first cousins):
Birth date and location
Current age or age at death
Ethnic background (since some conditions, like the BRCA 1 and 2 gene mutations linked to breast cancer in Ashkenazi Jewish women, have genetic ties to ethnicity)
Records of chronic diseases, surgeries, and causes of death, including the age when these conditions began
The AMA provides a convenient five-page form that you can print, complete, and take to your next medical appointment. For a digital option, the Surgeon General’s My Family Portrait website offers a secure, privacy-protected alternative.
This is an excellent starting point, particularly if you’re short on time or information. However, if possible, consider including the following additional details:
Occupational settings (e.g., exposure to harmful substances, desk jobs, or physically demanding work)
Residential environments (e.g., areas affected by disasters or toxic sites like Love Canal, or regions with significant sun exposure)
Personal habits (e.g., alcohol consumption, smoking, physical activity, and dietary patterns)
Reproductive health (particularly complications during pregnancy or childbirth)
These environmental and lifestyle details provide context for any hereditary conditions in your family. For example, discovering that your uncle passed away from lung cancer at a young age might suggest a genetic link—unless you find out he was a heavy smoker or worked in hazardous mining conditions.
“The overall pattern matters more than individual cases of specific diseases,” said Brull, who runs her own practice in Kansas. Knowing that a certain illness “runs in the family” is sufficient, especially if you have a rough idea of the age at which relatives were diagnosed.
“If breast cancer is common in your family but everyone developed it in their 80s, it’s far less alarming than if it appeared in their 30s,” Brull noted. “This significantly influences how we approach treatment for that individual.”
If time and resources are limited, consult your doctor to identify which aspects of your family’s medical history are most relevant. If you’ve been seeing the same general practitioner for a while, they’ll understand your health profile and can guide you on which conditions to prioritize.
As Brull explained, “Knowing someone had their appendix removed is likely far less critical than knowing they suffered a heart attack.”
How to Discuss Medical History with Family Members
At first glance, gathering this information might seem straightforward (unless you have a large extended family). However, not everyone is comfortable discussing health issues, particularly those that carry stigma, such as STIs or mental health conditions. This discomfort can result in significant gaps in your family’s medical history.
If you have a family historian, they’re an excellent resource. Someone passionate about genealogy will likely have gathered valuable health details about your ancestors and may also offer advice on how to approach relatives about sensitive topics. Photo albums and baby books can also be useful tools; consider bringing them out during family gatherings, even virtual ones like Zoom calls. These items can serve as natural conversation starters about family health and history.
Here are some example questions you might ask:
Where did you spend your childhood?
What types of physical activities were you involved in during your younger years?
What kind of meals did you typically eat as a child?
What was your workplace like?
Did you or your siblings/cousins experience any childhood illnesses?
“The key to having this conversation is approaching it with empathy,” Brull suggested. She provided a sample script: “I’m really keen on understanding my health background to improve my well-being, and I’d appreciate talking with you about it. Would that be alright?”
“Asking for their permission makes the process much smoother,” she added.
Remember, though, that memories can be unreliable. I once mistakenly believed my paternal grandmother had breast cancer. It wasn’t until I mentioned it to my father that he corrected me, explaining she only had a lump removed. Reflecting on it, I likely misheard a conversation about the lumpectomy as a child and jumped to the wrong conclusion. The difference in recommended preventative care between these two scenarios is significant, so accuracy is crucial when possible.
Ideally, you’ll clarify these details before visiting your doctor. If not, simply inform your physician that you’re uncertain.
“Sometimes simply asking which details are relevant and which aren’t can be the most useful step,” Brull noted. “Often, patients come in and say, ‘I discovered this about my health,’ and I respond, ‘It’s good to know, but it doesn’t change my recommendations.’”
Alternative Methods for Gathering Family Medical Histories
There are also ways to verify your family’s medical history. If a relative has passed away, Brull recommends obtaining their death certificate or medical records.
Each state has its own regulations regarding who can request a death certificate and how to do so (thanks to federalism). Typically, parents, children, siblings, spouses, and estate executors can easily obtain death certificates. Online services can simplify the process, especially if you’re requesting a certificate from another state.
Accessing a deceased relative’s medical records is more challenging due to HIPAA privacy protections, which remain in effect for 50 years after death. Estate executors (or personal representatives) can request these records without much trouble, but others generally cannot.
However, there’s a simple solution: Have your doctor request the records for you. HIPAA permits healthcare providers to obtain medical records of deceased relatives on your behalf.
For living relatives, these options aren’t available unless they grant you permission by signing a HIPAA release form. While this method isn’t the most efficient for compiling family history, it’s worth noting because it’s crucial to designate individuals who can access your medical records if you’re unable to make decisions—and vice versa. Parents, siblings, and adult children are all potential candidates for such access.
Over-the-Counter Genetic Testing Isn’t Reliable
The CDC provides specific recommendations for adopted individuals and prospective parents using adoption, egg, or sperm donation. These include sample medical history forms for adoption and online resources to help adopted children find information about their birth parents.
Over-the-counter genetic tests may seem appealing, as many claim to identify genes associated with various cancers and illnesses.
As Brull puts it: “If you’re looking for something entertaining and have $200 to spare, go ahead. Otherwise, skip it, because it won’t provide much value from a medical perspective.”
23andMe is the sole company with FDA approval to market its product as a reliable test for specific genetic variants, including those in the BRCA 1 and 2 genes. However, they only screen for three out of thousands—yes, thousands—of possible variants in these genes. This means you could still carry a genetic predisposition that doesn’t appear in your results.
Accuracy has also been a concern with some of these tests. A 2018 study revealed that 40 percent of variants detected by OTC test kits were false positives, while other variants flagged as “high risk” by OTCs were later found to be harmless upon retesting or evaluation by diagnostic labs.
It’s crucial to remember that genes are just one piece of the puzzle when it comes to medical conditions. Many individuals with the BRCA gene never develop breast cancer, and many without it do.
If you’re aware of a family history of a genetically linked disease, consult your doctor about genetic testing. Medical-grade tests are more accurate than OTC options, and testing through a physician typically includes access to genetic counselors, experts trained in genetics, and counseling to help interpret results and make informed health decisions.
It’s Alright If You Lack Details About Your Family History
“Not having a family history is perfectly fine.”
Brull stressed this point multiple times during our Zoom conversation. “Even without knowing your family history, you can still work effectively with your primary care doctor to maintain or improve your health,” she explained.
So, gather your family history if possible, but keep in mind that health is influenced by genetics, environment, and lifestyle. While we can influence the latter two through diet, exercise, and stress management, it’s important to acknowledge that systemic issues like racism and classism impact access to healthy food, safe working conditions, and even basic healthcare.
Not all genetic risks are the same. For instance, over half of women with BRCA 1 and 2 variants develop breast cancer by age 70-80, while my risk of colorectal cancer is significantly different. According to the National Cancer Institute’s Colorectal Cancer Risk Assessment Tool, my lifetime risk is nearly double the U.S. average. While that might sound alarming, the average risk is 3.6 percent, and mine is 6.6 percent. (The tool only calculates risk for those 45 and older, and I’m 41.)
Chances are, I won’t develop colon cancer, and that’s a comforting thought. Still, I’m thankful to be aware of my family history, as it ensures that if the odds turn against me, the disease can be detected early enough for effective treatment. While knowledge doesn’t always equate to power, understanding your family’s medical background can provide you and future generations with a significant advantage in preventive healthcare.
