Why You Should Look Into Your Family History of Illness (and How to Find It)

Every two or three years I have a colonoscopy to check for rectal cancer. This is a much stricter schedule than current guidelines set out by the US Preventive Services Task Force , which advises adults 45 and older to have non-invasive stool tests every 1 to 3 years and screening colonoscopy only every 10 years.

I get tested more often because my family had colon cancer, the third most common and fatal disease in American men and women. If I have a chance of getting colorectal cancer, it is hoped that this intensified screening will allow it to be identified in time in order to be cured.

When we are asked to fill out paperwork in the doctor’s office, there is usually a section in which we write down the diseases that we have in our family, the relatives they had, and often how old these relatives were at the time of the diagnosis.

Doctors use this information to determine the correct screening recommendations for life-threatening diseases such as cancer and heart disease as we get older. It is also helpful for younger patients. “If you know that there is a strong family history of obesity, diabetes and heart disease,” said Dr. Jen Brull , board member of the American Academy of Family Physicians , “you can advise [patients] on which path they can take. take to avoid these problems in your life. “

However, for many of us, this information is not always at hand.

It may not be easy for your family to discuss illness. You may have been adopted. Family members may have moved abroad or are living separately. You may not be able to remember how old your grandmother was when she was diagnosed with difficulty walking when you were 7 years old. Multiple sclerosis? Lupus? Or just arthritis?

Taking an accurate family medical history is a great way to personalize your health care so that you and your doctor can make better decisions about your risk for various diseases and therefore how best to prevent them. If you have children, this is also information that you want to pass on to them.

This is easier said than done, though, so here are some tips and tools to get you started.

What information should there be in a family history?

The American Medical Association (AMA) recommends that you collect the following information about yourself and each of your first, second, and third degree relatives (both grandparents, your parents, their siblings, and all cousins). accurate family history:

• Date and place of birth
• Current age (or age of death)
• Ethnicity (since certain diseases or conditions may have a genetic component associated with ethnicity, for example, Ashkenazi Jewish women have a higher prevalence of BRCA 1 and 2 gene mutations that can cause breast cancer)
• History of chronic illness, surgery, and / or cause of death, including age of onset

They even have a handy five-page sheet that you can print, fill out, and bring to your next doctor’s appointment. If you prefer an electronic tool, the Chief Surgeon’s My Family Portrait website is a secure version.

This is a great starting point, especially if you are short on time or information. However, if you can, consider adding the following information :

• Work environment ( eg , exposure to pollutants, sedentary office work, intense physical labor)
• Living environment ( such as natural disasters or toxic places such as the Love Channel , places with high sunlight)
• Lifestyle ( eg , drinking alcohol, smoking, exercising, diet)
• Reproductive history (particularly problems with pregnancy or childbirth)

This environmental and lifestyle information will contextualize any conditions in your family. For example, information that your uncle died of lung cancer at a young age could indicate a possible genetic factor – unless you find out that he smoked three packs a day or that he worked in a mine.

“The big picture is more important than specific people with specific conditions,” said Brull, who runs her own practice in Kansas. It is enough to know that a particular disease is “inherited in the family”, especially if you have a general idea of ​​the age at which your relatives were diagnosed.

“If there is a family history of breast cancer, but everyone contracted it at age 80, it’s much less of a concern than if… everyone had breast cancer,” Brull explained. “It is absolutely important how we feel about this person.”

If you are short on time and resources to take a family history, ask your doctor about which aspects of your family’s medical history you should focus on. If you visit your therapist for a while, he will have an idea of ​​your general health and therefore what conditions might be more applicable to your life.

As Brull said, “Knowing that someone has had their appendix removed is probably far less important than knowing that they’ve had a heart attack.”

How to tell family members about their medical history

At first glance, this information may seem easy to compile (unless you have dozens of cousins). However, not everyone is comfortable talking about health problems, especially illnesses that can still cause stigma, such as STIs or mental illness, and this can lead to serious gaps in family history knowledge.

If you have one, a permanent family historian is a great option. Anyone in your family who is obsessed with genealogy has likely not only collected a lot of useful information about the health of your ancestors, but can also provide tips on how to talk with family members about their love life. Photo albums and children’s books can also be helpful; consider getting something the next time you have a family holiday (even via Zoom). They can be a great opportunity to start these kinds of conversations about health and family history.

Here are some examples of questions you can ask:

• Where did you grow up?
• What types of physical activity did you do as a child?
• What kind of food did you eat as a child?
• What was your work environment like?
• Did you get sick as a child? What about your siblings / cousins?

“The best way to approach this conversation is kindness,” Brull advised. She suggested a potential scenario: “I am really interested in learning more about my health history in order to become a healthier person, and I would like to talk to you. Things are good?”

“The fact that you need their permission makes it quite doable,” she added.

Keep in mind, however, that memories are error prone. It once occurred to me that my paternal grandmother had breast cancer. Only when I told my father about this, he explained that at best she had a bump removed. In hindsight, I think I heard excerpts from the conversation about lumpectomy as a child and just drew the wrong conclusions. However, there is a huge difference in the number of checkups offered for the two situations, so you want to get the information right if you can.

Ideally, you should find this out before going to the doctor. However, if you haven’t, just tell your doctor that you are not sure.

“Sometimes people just ask these questions out loud about what’s important and what’s not, and that can be most helpful,” Brull said. “Often my patients come and say, ‘I learned a thing or two about my health,’ and I say, ‘Well, this is good for you, but it doesn’t matter what I recommend.’

Other options for obtaining family records

There are also ways to check your family’s medical history. If your family member has died, Brull suggests asking for a death certificate or medical records.

Each state has different rules when it comes to who and how can order a death certificate (cheers, federalism), although usually parents, children, siblings, spouses and inheritors can easily obtain death certificates. There are online services that can make this process easier for you, especially if you are requesting a death certificate from a state other than your current place of residence.

It is more difficult to obtain a deceased relative’s medical records because HIPAA’s privacy protections remain in effect for up to 50 years after a person’s death . Real estate artists (also called personal representatives) can request these recordings without much difficulty, but that’s about it.

However, there is a simple workaround: ask your doctor to do it for you. According to HIPAA, they are allowed to request medical records of deceased relatives on your behalf.

For family members who are still alive, these options do not apply unless they give you permission to access their health history by signing a HIPAA authorization form . While this is a rather ineffective way of collecting family history, I mention it here because it is important to make sure you appoint people who can access your medical records in the event that you are incapacitated and unable to 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 have access to.

OTC genetic testing isn’t worth it

The CDC lists specific suggestions on how to collect family history information for adoptees, as well as for parents who wish to adopt or plan to use an egg or sperm donor to give birth to children. These include sample adoption case histories and websites where adopted children can search for information about their biological parents.

It is tempting to look for answers to over-the-counter genetic tests, as many of them look for specific genes associated with various types of cancer and disease.

However, take this from Brull: “If you want to have fun and have $ 200, go for it. If you don’t do it, don’t do it, because it will not benefit anyone in the medical world. ”

23andMe is the only company that has FDA approval to market its product as a reliable test for certain genetic variants, including those found in the BRCA genes 1 and 2. However, they only test three out of the thousands – yes, thousands – of possible variants found in genes BRCA1 and 2. So you may still have this genetic predisposition, but it is not reflected in your results.

Accuracy was also an issue for some of these tests. A 2018 study found that 40 percent of the variants identified by over-the-counter test kits were false positives, while other variants classified as “increased risk” by over-the-counter drugs were found benign when re-tested or evaluated in diagnostic laboratories.

Most importantly, our genes are often just one of the factors that determine whether we have a particular disease. Many people with the BRCA gene never develop breast cancer, and many people without it.

If you know you have a family history of illness with a genetic component, talk to your doctor about genetic testing. Not only are medical tests more accurate than over-the-counter tests, but genetic testing done by a doctor usually includes access to genetic counselors , experts trained in genetics, and counseling to help people understand genetic test results and make informed decisions about their health. … risks.

If you do not have information about your family history, it’s okay.

“If you don’t have a family history, that’s okay.”

Brull has repeatedly emphasized this point in our talk about Zoom. “Not knowing your family history doesn’t mean you can’t have a good partnership with your healthcare provider … to stay as healthy as you are, or to work towards better health,” she said.

So, if you can, take your family history, but remember that health is a combination of genetic, environmental, and lifestyle factors. We have some control over the latter two factors through diet, exercise, and stress management, among others. (Note that I am saying something : racist and classical politics and practice affects our individual ability to access affordable healthy food, work that does not stress our brains and bodies, and even our access to basic preventive health services. )

Also, not all genetic risks are created equal. While more than half of women with BRCA variants 1 and 2 develop breast cancer by the age of 70-80, my own chances of colorectal cancer vary greatly. According to the National Cancer Institute’s Colorectal Cancer Risk Assessment Tool , my lifetime risk is nearly double the average risk in the US population. This sounds intimidating, except that the average risk is 3.6 percent and my own risk is 6.6 percent. (Or close to this: the assessment tool only calculates risk for people 45 and older, and I’m 41).

Chances are I won’t get colon cancer and that’s a relief. However, I am grateful that I know my family history so that, if the odds are not in my favor, I caught the disease in time to survive. Knowledge isn’t always power, but knowing your family’s history can give you and your descendants an edge when it comes to preventative care.