You may draw a blank when you see the section to record your family medical history at the doctor’s office. You’ve likely heard that it’s important to know about any diseases that run in the family, like heart disease and breast cancer, which are life-threatening and can have a genetic component. However, you may have little to no details about whether family members had these conditions, and what you do know may be vague.
You’re not alone. A recent U.S. study found that nearly 95% of adults believed family health history was important. Yet, only 15% said they were actively collecting it.
“Stigma can interfere with sharing information within the family,” says Dr. Deborah Cragun, Ph.D., CGC, MS, an associate professor of genetic counseling at USF.
Dr. Cragun wants more people to get a comprehensive family health history, pointing to research showing it’s one of the simplest tools for determining whether you’d benefit from prevention, screening or genetic evaluation for certain conditions. In other words, it’s not hyperbolic to say that knowing your family health history is life-saving.
It’s also extremely helpful if you’re seeing a genetic counselor.
“You don’t need to know everything about your family before seeing a genetic counselor. However, the more you know, the better,” Dr. Cragun says. “We can start with what you know and help figure out which missing pieces matter most.”
She often tells people to start with one key piece of family health history many people miss. She reveals it (and a few others) below, plus how to fill in the gaps for your family health history.
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Most People Are Missing This Key Piece of Their Family Health History, Genetic Counselor Says
Dr. Cragun says it’s critical to know the age (or age range) at which a family member developed a disease. “The age at which someone develops a disease can change how we interpret it,” she explains. “Knowing the age at diagnosis can determine the need for genetic counseling or genetic testing and whether screening should start earlier.”
The CDC also recommends collecting both the diagnosis and the approximate age when symptoms began or a diagnosis was made. Dr. Cragun emphasizes that it is helpful to know even an approximate age like “early 40s” or “around 60.”
“A mother who first develops breast cancer at age 38 is much more likely to have an inherited cancer risk gene than one who first develops breast cancer at 67,” she says. “Heart risk is similar. A heart attack at age 40 may make us more concerned about an inherited condition than a first heart attack at 78.”
Dr. Cragun adds that people with family members who developed diabetes in their 30s or 40s have a different “family story” than people whose relatives developed the disease in their 70s or 80s.
She reports that a lot of people “remember the family story but not the medical details.” For instance, she’ll hear things like, “My grandpa had a heart attack” or “My aunt had breast cancer,” but can’t answer a follow-up question about age.
Still, research suggests that fewer than 4% of primary-care records had family histories that were detailed enough to accurately assess a person’s risk for common complex diseases. And in a recent national survey, about two-thirds of adults reported that collecting family history was somewhat or very difficult. About three-quarters of the people who struggled were no longer in contact with their relatives, or the family members had died.
“In my own research of people with hereditary cancer, a lack of contact or closeness with relatives is a major reason people have given us for not sharing their genetic test results with family members,” Dr. Cragun says.
Related: The One Thing That’s More Important for Longevity Than Your Genes
How To Learn More About Your Family Health History
It’s not too late to start filling in the gaps for your family health history. Dr. Cragun shared tips for gathering the information you need to support your own health.
Ask family members. Dr. Cragun says this is the easiest place to start. “Instead of ‘Did Grandma have cancer?’ ask ‘About how old was she when she was diagnosed?’” she suggests. “Even a rough estimate can be useful.” Speak to more than one relative. Double- or triple-sourcing family health history can help you gain more accurate information. “Different people often remember different pieces of the story,” Dr. Cragun says. “Sometimes asking when symptoms started, how old the person was when they died or what else was happening in the family at the time can help narrow down the age.” Look at other sources. If someone has died, Dr. Cragun says you can look for an obituary, death certificate or old medical paperwork. “Medical records can help if you’re authorized to access them,” she adds.“And don’t give up because there are gaps,” she emphasizes. “Almost everyone has gaps in their family history. I only found out in 2017 about an important heart condition in my own family, despite my attempts to ask detailed health questions. Even a few additional details can give you and your healthcare providers useful information about your health risks.”
Related: Ask a Brain Health Expert: 10 Questions About Alzheimer’s You’ve Been Too Afraid To Ask
Other Key Pieces of Family Health History to Know
Beyond the approximate age of diagnosis, Dr. Cragun says people often don’t have a few key pieces of family health history. She revealed them below (and shared why they’re important).
1. Relatives outside of the immediate family who had illness
Your mom may not have had breast cancer, but what about an aunt? Dr. Cragun says genetic counselors (and you) benefit from knowing this information.
“Grandparents, aunts, uncles, nieces, nephews, half-siblings and cousins can help fill in important gaps in information, which matters because a pattern may not be obvious if you look only at the people closest to you,” Dr. Cragun says. “Information about an inherited cancer risk, for example, can be very important to relatives. Cousins and other more distant relatives may have inherited the same gene too.”
2. The actual diagnosis
“Cancer” and “heart disease” are broad terms.
“It can help to ask, ‘What kind of cancer was it?’ or ‘Where did the cancer start?’” Dr. Cragun says. “If no one remembers the exact diagnosis, ask about symptoms and treatments.”
Dr. Cragun says other helpful resources include:
Medical records Pathology reports Genetic test reports Death certificates or conversations with other relatives“For cancer in particular, an old pathology report can be much more useful than a family recollection that someone had ‘female cancer’ or ‘stomach cancer,’” Dr. Cragun notes.
3. Mental health conditions
Dr. Cragun says that mental health and addiction are also important pieces of family health history that people have trouble getting.
“Topics can carry a lot of stigma, so families may be less likely to talk openly about them,” she says. “People may also not realize that substance use can sometimes be related to attempts to cope with anxiety, depression, trauma or other mental health conditions.”
Related: ‘I’m a Rheumatologist—This Is the One Thing People Forget To Mention About Their Family History’
Sources:
Dr. Deborah Cragun, Ph.D., CGC, MS, an associate professor of genetic counseling at USF Family health history: underused for actionable risk assessment. Lancet. Family Health History and Adults. CDC. Knowledge, Perceptions, and Barriers to the Collection of Family Health History Data. Journal of the American Board of Family Medicine. Collection of family health history for assessment of chronic disease risk in primary care. North Carolina Medical Journal.Hence then, the article about think you know your family health history a genetic counselor says most people are missing this key piece was published today ( ) and is available on Parade ( Saudi Arabia ) The editorial team at PressBee has edited and verified it, and it may have been modified, fully republished, or quoted. You can read and follow the updates of this news or article from its original source.
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