Knowledge of Family History can be Important- According to the Centers for Disease Control, knowledge of family history can be important for determining a child’s health risks. It can help make a diagnosis, if a child presents with symptoms, or suggest strategies families can employ to minimize or postpone the onset of certain diseases.
Talk it up, write it down, pass it on! Your family health history is important. It helps you and your doctor to make a personal health care plan. How and what information to collect can be confusing, but is important for you and your doctors. Follow these simple steps to create your family health history:
- Think about three generations of relatives. This means your parents, children, siblings, nieces/nephews, aunts/uncles, cousins, and grandparents.
- Write down any significant sickness, disease, or other health condition for each of these family members. Be sure to include birth defects, learning problems/delays, intellectual disabilities, and chronic health problems (for example: diabetes, thyroid disease, heart disease, cancer, Alzheimer’s disease). Sudden deaths should also be written down.
- For each health problem, it is important to write down the age the person was first diagnosed. Details on the type of disease are also important. For example, instead of saying that a person has “thyroid disease,” it is important to write down whether it was hyper- or hypothyroidism, or a nodule, cancer, etc. For family members with cancer, the type of tumor and where it was first found is important (ex. breast cancer that spread to the brain should be listed as breast cancer. Write down other important details if known, such as whether it was in one or both breasts, and the tumor type, such as adenocarcinoma). Heart disease is also a common health problem but there are many types, including coronary artery disease, structural defects, cardiomyopathies, arrhythmias, etc., so the more you can find out the better.
- Talk to as many family members as possible, especially about relatives who have passed away. Many times you may find that different family members have different stories about what happened to certain people in your family. It may take some detective work to get a good understanding of the family health history. Family gatherings may be good times to ask questions. It can be hard to collect your family health history, especially if someone in your family is private about their sickness or if you have certain family members with whom you do not speak often. Any information is better than none, however, so write down what you can and talk to your doctor about the information you are able to collect.
Your primary care provider is a good person to start the conversation about family history. He/she may be able to discuss general screening guidelines based on your personal family history. You may need additional screening above that which is recommended for the general population based on your family history. Additionally, your primary care provider may refer you to a specialist if the risk is such that additional professional care is recommended.
A genetic counselor, a master’s trained health care professional who specializes in assessing health risk based on family history, is also an important resource in your community. Medical geneticists (physicians) are also available. You may seek an appointment from a genetic counselor or medical geneticist if you are concerned about your own health condition or one affecting other family member(s). Genetics providers are trained to analyze your personal history and your family tree to assess whether a condition may be hereditary or is more likely to be sporadic. They may work in conjunction with your other physicians to develop a personalized health care plan for you.
Some individuals may also seek guidance from specialists if a genetics provider is not available. For instance, talk to your OB-Gyn if you are concerned about your family history of breast, ovarian, or uterine cancer. If you see a cardiologist, talk to them about your family history of heart disease.
- You may be able to prevent disease through measures such as preventive medications, prophylactic surgeries, and lifestyle changes based on your family health history.
- Family history information may allow for more frequent screening for disease, which in turn can catch the disease at an earlier stage when it may be more treatable.
- Your children and future generations will benefit from your collection of the family health history, whether it is through understanding risks or genetic testing for heritable traits.
- It is a simple tool to assess your risk for disease.
- Collecting your family health history is free!
- Everyone has a family history of something. Knowing what that is may reduce disease burden.
- For some, collecting family history may save a life.
- It may explain why you or a loved one experienced a certain health problem.
- It may bring your family closer together by sharing experiences and information and offering support.
- With some exceptions, it is a nearly universal health care tool.
- No matter what your genetic makeup, exercise daily, eat a healthy diet and do not smoke.
- If you are a potentially pregnant woman, follow the CDC’s recommendation to have a diet rich in folate.
- Talk with your relatives about their health conditions. The Surgeon General has a webbased tool that prints out a family tree and gives some general health recommendations.
- Be informed and stay tuned. Most genetic tests provide useful information, while some genetic tests may not be ready for prime time. Always consider the pros and cons of any test. If it sounds too good to be true, a healthy dose of skepticism may be in order.
- Use reliable web tools to increase your genetic health literacy. Genetics Home Reference and Genetests are reliable web resources with many helpful links.
- Advocacy groups such as Genetic Alliance and research networks such as clinical trials.gov are gateways to more condition-specific information, support networks, and research.
- Feel comfortable in raising the topic of second opinions with your health care provider, particularly if there is not a clear-cut organizing cause for a variety of symptoms and findings.
- For all of us, illness is a risk of being alive in the first place. Some of us may have genetic dispositions that place us at higher risk. As Dr. Francis Collins, director of the NIH said, “We are all diseased, just not diagnosed yet.” The challenge is to understand what aspects of your genetic makeup place you at higher risk and to stay up-to-date about any improved prevention and management for those conditions.
- Talk with your health care provider about your family history. Mentioning a positive family history of similar findings, inherited or rare conditions, early deaths, and extraordinary laboratory tests (especially genetic tests) on both the mother and father’s sides of the family can be clues to more specific diagnoses.
- Encourage young people to consider careers in genetics. With the growth of genetic information to benefit our health, we need to have trained persons who can help translate discoveries into improved well-being. For further information visit The American Society of Human Genetics , National Society of Genetic Counselors , American College of Medical Genetics and Genomics .
Family History Resources
- Knowing Your Family History is Important – Global Genes
- Deaf Community- How to Collect Family Health History: What’s Important? Youtube Video
- CDC resources on family health history
- My Family Portrait
Developed by the Surgeon General, My Family Portrait is a tool that can help families collect family health histories. It contains information and a form to fill out about your family health history, helps families understand their genetic inheritance and risk for disease, can be used to partner with medical professionals, and comes in several languages.
Resources for Patients & Families
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