Every two or three years, I have a colonoscopy to screen for colorectal cancer. That’s a far more stringent schedule than the current guidelines outlined by the U.S. Preventive Services Task Force, which advises adults ages 45 and older to get non-invasive stool sample tests every 1-3 years and a screening colonoscopy only every 10 years.
I get tested more often because I have a family history of colon cancer, a disease that is the third most common and most lethal cancer for American men and women. On the off chance I do get colorectal cancer, the hope is that this increased screening will catch it in time to be treatable.
Whenever we’re asked to fill out paperwork at the doctor’s office, there’s usually a section where we record the illnesses that run in our family, the relatives who have had them, and often what age those relatives were when diagnosed.
Doctors use this information to determine proper screening recommendations for life-threatening illnesses like cancer and heart disease as we get older. It’s also helpful for younger patients. “If you know that there’s a strong family history of obesity and diabetes and heart disease,” said Dr. Jen Brull, a member of the American Academy of Family Physicians board of directors, “you can advise [patients] about what path they can take to avoid those problems in their own life.”
Many of us don’t have this information right at our fingertips, however.
Perhaps illness is not something easily discussed in your family. Perhaps you were adopted. Perhaps family members have moved abroad or are estranged. Perhaps you can’t remember how old Grandma was when she was diagnosed with that thing that made it hard for her to walk when you were 7 years old. Multiple sclerosis? Lupus? Or just arthritis?
Compiling an accurate family medical history is an excellent way to personalize your healthcare so you and your doctor can make better informed decisions about your risk for various illnesses and, therefore, how best to prevent them. If you have kids, it’s also information you’ll want to pass along to them.
It’s easier said than done, though, so here are some tips and tools to get started.
What information should be in a family medical history?
The American Medical Association (AMA) advises collecting the following information about yourself and each of your first-, second-, and third-degree relatives (both sets of grandparents, your parents, and their siblings, and all first cousins) to compile an accurate family history:
- Date and place of birth
- Current age (or age of death)
- Ethnicity (because certain illnesses or conditions can have a genetic component tied to ethnicity, such as Ashkenazi Jewish women having a higher prevalence of the BRCA 1 and 2 gene mutations that can cause breast cancer)
- History of chronic illnesses, surgeries, and/or causes of death, including age of onset
They even have a handy five-page sheet you can print, fill out, and bring to your next doctor’s visit. If you prefer an electronic tool, the Surgeon General’s My Family Portrait website is a privacy-protected version.
That’s a great starting place, especially if you have limited time or information available. If you can, though, consider adding the following information:
- Work environments (e.g., exposure to pollutants, sedentary office work, intense physical labor)
- Living environments (e.g., disaster or toxic sites like Love Canal, locations with high sun exposure )
- Lifestyle habits (e.g., drinking, smoking, exercise, diet)
- Reproductive history (specifically, problems with pregnancy or childbirth)
This environmental and lifestyle information contextualizes any conditions that run in your family. For instance, learning that your uncle died of lung cancer at a young age can point to a possible genetic factor—unless you learn that he smoked three packs a day, or that he worked in mines.
“The big picture is more important than specific people with specific diseases,” said Brull, who owns her own practice in Kansas. It’s enough to know that a particular illness “runs in the family,” especially if you have a general sense of the age at which your relatives were diagnosed.
“If there’s a family history of breast cancer but everyone got it in their 80’s, that’s a lot less concerning than if … everybody got it in their 30’s,” Brull explained. “It absolutely makes a difference in how we treat that person.”
If you’ve got limited time and resources to look into your family history, ask your doctor which aspects of your family’s medical history you should focus on. If you’ve been seeing your general practitioner for a while, they’ll have an idea of your general health and, therefore, a sense of which conditions might be more applicable to your life.
As Brull put it, “Knowing that someone had their appendix removed is probably a lot less important than knowing they had a heart attack.”
How to approach family members about their medical history
At first glance, this information may not seem too difficult to compile (unless you have dozens of cousins). Not everyone feels comfortable talking about health issues, however—especially illnesses that can still carry stigmas, like STIs or mental illnesses—and that can lead to some crucial gaps in family history knowledge.
If you have one, the resident family historian is a great option. Anyone in your family obsessed with genealogy will not only likely have collected lots of useful health information on your ancestors but also might have tips on how to talk to family members about their personal lives. Photo albums and baby books can also be helpful; consider getting some out the next time you have a family gathering (even over Zoom). They can be great opportunities to start these kinds of conversations about family health and history.
Some sample questions you can ask include:
- Where did you grow up?
- What kinds of physical activity did you do while growing up?
- What kind of food did you eat when you were a kid?
- What was your work environment like?
- Did you have any illnesses as a kid? What about your siblings/cousins?
“The best way to approach this conversation is with kindness,” Brull advised. She offered a potential script: “I’m really interested in learning more about my health history so that I can be a healthier person, and I’d love to have a conversation with you. Is that okay?”
“That you want their permission to do this makes it very doable,” she added.
Keep in mind, though, that memories are fallible. I once got it into my head that my paternal grandmother had breast cancer. Only when I mentioned it to my father did he clarify that, at most, she had a lump removed. Looking back, I think I overheard snippets of a conversation about the lumpectomy as a kid and just drew the wrong conclusions. There’s a vast difference in the amount of preventative screening suggested for these two situations, however, so it’s the kind of information you want to get right, if you can.
Ideally, you’ll figure it out before you show up at the doctor’s office. If you haven’t, however, just tell your doctor you’re not sure.
“Sometimes just asking those questions out loud about what matters and what doesn’t matter may be the most helpful thing that people can say,” Brull said. “Oftentimes, my patients will come in and say, ‘I’ve learned this thing about my health,’ and I’m like, ‘Well, it’s good for you to know, but it doesn’t make a difference in what I would recommend.’”
Other options for obtaining family members’ medical histories
There are also ways to fact check your family’s medical history. If your family member is deceased, Brull suggests requesting a death certificate or their medical records.
Every state has different rules when it comes to who can order a death certificate and how (yay, federalism), although usually parents, children, siblings, spouses, and estate executors can easily acquire death certificates. There are online services that can streamline the process for you, especially if you’re requesting a death certificate from a different state than your current residence.
Acquiring a deceased relative’s medical records is more complicated, since HIPAA privacy protections apply until 50 years after a person’s death. Estate executors (also called personal representatives) can request these records with little difficulty, but that’s about it.
That said, there’s an easy workaround: Ask your doctor to do it for you. Under HIPAA, they’re allowed to request medical records of deceased relatives on your behalf.
For family members who are still living, these options don’t apply unless they give you permission to access their health history by signing a HIPAA release form. While it’s a rather inefficient way to gather family history, I mention it here because it’s important to make sure you designate people who can access your medical records in case you are incapacitated and cannot make medical decisions—and vice versa. Parents, siblings, and adult children are all potential people who should have access to your records and whose records you should be able to access.
Over-the-counter genetic testing isn’t worth it
The CDC lists specific suggestions on how to gather family history information for people who are adopted, as well as for parents who want to adopt or plan to use an egg or sperm donor to have children. These include sample adoption medical history forms and websites where adopted children can search for information on their birth parents.
It’s tempting to look to over-the-counter genetic tests for answers, since many of them look for certain genes that have been linked to various cancers and illnesses.
Take it from Brull, though: “If you want to do a fun thing and have $200, go for it. If you don’t, don’t do it, because it’s not going to really be helpful for anyone in the medical world.”
23andMe is the only company that has FDA approval to market their product as a reliable test for certain genetic variants, including those found in the BRCA 1 and 2 genes. However, they only test for three of the thousands—yes, thousands—of possible variants found in the BRCA1 and 2 genes. So, you could still have this genetic predisposition but not have it show up in your results.
Accuracy has also been an issue with some of these tests. A 2018 study found that 40 percent of variants identified by OTC test kits were false positives, while other variants classified as “increased risk” by the OTCs were found to be benign when re-tested or evaluated by diagnostic labs.
Most importantly, our genes are often just one factor in determining whether we have a particular medical condition. Many people with the BRCA gene never develop breast cancer, and many people without it do.
If you know you have a family history of a disease with a genetic component, consult your doctor about genetic testing. Not only are the medical-grade tests more accurate than OTCs, but genetic testing through a physician usually comes with access to genetic counselors, experts trained in genetics, and counseling to help people understand the results of genetic tests and make informed decisions about their health risks.
If you have no details of your family history, it’s okay
“If you don’t have [a] family history, that’s okay.”
Brull repeatedly emphasized this point in our conversation over Zoom. “Not knowing family history doesn’t mean you can’t partner well with your primary care doctor … to make sure that you stay as healthy as you are or work towards better health,” she said.
So, compile your family history if you can, but remember that health is a combination of genetic, environmental, and lifestyle factors. We have some control over the last two factors through diet, exercise, and managing our stress levels, among other things. (Notice I say some: racist and classist policies and practices affect our individual ability to access affordable healthy food, work jobs that don’t tax our brains and bodies, and even our access to basic preventative healthcare.)
Not all genetic risks are created equal, either. Whereas over half of women with the BRCA 1 and 2 variants develop breast cancer by age 70-80, my own chance of colorectal cancer is vastly different. According to the National Cancer Institute’s Colorectal Cancer Risk Assessment Tool, my lifetime risk is close to double that of the average risk in the U.S. population. That sounds terrifying, until you consider the average risk is 3.6 percent and my own risk is 6.6 percent. (Or close to it: the assessment tool only calculates risk for people 45 and older, and I’m 41.)
More likely than not, I will not get colon cancer, and that’s a relief. All the same, I’m grateful to know my family history so that, if the odds are not in my favor, I’ll have caught the disease in time to survive it. Knowledge isn’t always power, but knowing your family history can give you and your descendants an edge when it comes to preventative care.