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Does anyone in your family have similar symptoms? Are any of the above half-brothers/sisters and/or step-brothers/sisters? Are any of the above adopted or foster children? Is your mother living? Is your father living? What did your mother die of? What did your father die of? Is there a history of diabetes/cancer/heart disease/arthritis/strokes in your family? How can I learn about my family health history? The best way to learn about your family health history is to talk to your family, Ask questions, catch up at family gatherings, draw a family tree, and record health information. If possible, look at death certificates and family medical records to confirm the information you have collected. How can knowing my family health history help lower my risk of disease? Answer: You can’t change your genes, but you can change behaviors that affect your health, such as smoking, inactivity, and poor eating habits. People with a family health history of chronic disease may have the most to gain from making lifestyle changes. In many cases, making these changes can reduce your risk of disease even if the disease runs in your family. Another change you can make is to participate in screening tests, such as mammogram and colorectal cancer screening, for early detection of disease. People who have a family health history of a chronic disease may benefit the most from screening tests that look for risk factors or early signs of disease. Finding disease early, before symptoms appear, can mean better health in the long run. That’s why it’s important for your health care provider to know your family health history as well. Is there a tool that can assist me in collecting my family health history? Answer: There is a computer-based tool available in both English and Spanish that can be accessed at http://www.hhs.gov/familyhistory. Since the tool is downloaded onto your computer, no information is collected or recorded anywhere else. The tool works by guiding you through steps on how to collect and enter family history information and results in a printed family health portrait similar in format to a genetic family tree. If you prefer a Web-based site to create and print your family history, visit: English: http://familyhistory.hhs.gov/ Spanish: http://familyhistory.hhs.gov/spanish/ What diseases in my family health history should I be concerned about? Answer Genetic factors contribute to the cause, natural history, and response to therapy of nearly every type of illness. Genetic disorders are influenced by abnormalities in your DNA. Some of these abnormalities cause more commonly recognized genetic conditions such as sickle cell disease or cystic fibrosis. As research continues, we all learn more about the role of genes in chronic diseases experienced throughout a lifetime. Chronic diseases that have been associated with an increased family history include breast cancer, colon cancer, heart disease, stroke, diabetes, depression and other psychiatric illnesses. Hearing loss and vision loss have also been found to have a genetic contribution. Sometimes a family history can even suggest variation in how useful certain drugs are in treating conditions experienced by family members. Side effects or responses to treatments can be influenced by genetic factors and may be cause for concern. My mother had breast cancer. Does this mean I will get cancer too? Answer Having a family member with a disease suggests that you may have a higher chance of developing that disease than someone without a similar family history. It does not mean that you will definitely develop the disease. Genes are only one of many factors that contribute to disease. Other factors to consider include your diet, exercise patterns, and where you live or work. If you are at risk for breast cancer, consider following national guidelines for a healthy diet and regular exercise (USDA). It is also important to follow recommendations for screening tests (such as mammograms) that may help to detect disease. Because both of my parents had heart disease, I know I have “bad” genes. Is there anything I can do to protect myself? Answer: There are no "good" or "bad" genes. Most human diseases, especially common diseases such as heart disease, result from the interaction of genes with environmental and behavioral risk factors, both of which can be changed. The best disease prevention strategy for anyone, especially for people with an inherited risk, includes reducing risky behaviors (such as smoking), as well as increasing healthy behaviors (such as regular exercise). What aspects of family health history affect disease risk? Answer Everyone’s family health history of disease is different. It is important to talk with other family members to gather information. Talking may help you and your family members identify key features in your family history that may point to increase risk for disease. These key features include: Diseases that occur at an earlier age than expected (10 to 20 years before most people get the disease). Disease in more than one close relative. Disease that does not usually affect a certain gender (for example, breast cancer in a male). Certain combinations of diseases within a family (for example, breast and ovarian cancer, or heart disease and diabetes). If a family has one or more of these features, there is an increased familial or family health risk. Sometimes, a family may have an inherited form of disease that is passed on from generation to generation. In these families, the risk for disease may be very high and disease may occur at young ages and this is what your family history will help a health care professional to determine. What does family health history have to do with genetics? Answer Your family health history reflects the combination of shared genes, environment, behavior, and culture. Traits like curly hair, dimples, leanness, and athletic ability are partly inherited. So are risks for health conditions like asthma, high blood pressure, diabetes, and heart disease. Knowing your family health history should be the first step in gathering information that may affect your health. What if I can't find out my family health history? Answer Not everyone has access or knowledge to detail every member of their family's health history, so there may be blank areas. Seeking out legal records through state and government offices requires effort, but may provide additional details. Genealogy resources may also provide some leads for consideration in your searching for hard to find information. If you are adopted, the challenge may also include accessing family medical information from birth parents. The National Adoption Clearinghouse at http://www.childwelfare.gov/adoption/index.cfm is a resource that may be utilized to learn more about this process. It offers information about searching for birth parents that may be helpful at http://www.childwelfare.gov/adoption/birth/for/searching.cfm. For more information about family health history, you may want to visit: http://www.hhs.gov/familyhistory/ What if there is no family history of disease? Will I be healthy? Answer: Even if you do not have a history of a disease in your family, you may still be at risk for that disease. This is because: Your lifestyle, personal health history, and other factors influence your chances of getting a disease. Your family could have a history of disease that you don’t know about. You could have family members who died young, before they developed heart disease, diabetes, cancer, or other diseases. What is a family health portrait? Answer: The family health portrait is a visual depiction of your family tree. It is constructed using circles and squares to see who is related to whom and how they are related. In terms of health and disease, a family health portrait can help show a health care provider how a particular trait or disease is passed on from generation to generation. What should I do with family health history information that I collect? Answer: First, write down the information you collect about your family health history and share it with your health care professional. If you have recently changed providers make sure to bring your records to your new health care provider. Second, remember to keep this information updated and share information about your health condition with your relatives. Third, pass it on to your children, so that they too will have a family history record. To record your family's health history you can print out a brochure that includes a form: English: http://www.hhs.gov/familyhistory/downloads/MyFamilyHealthPortrait--English.pdf Spanish: http://www.hhs.gov/familyhistory/downloads/MyFamilyHealthPortrait--Spanish.pdf OR, visit My Family Health Portrait to create a personalized family health history report from any computer with an internet connection; English: http://familyhistory.hhs.gov/ Spanish: http://familyhistory.hhs.gov/spanish/ OR, download software onto your computer: English: http://www.hhs.gov/familyhistory/download.html Spanish: http://www.hhs.gov/familyhistory/download_spanish.html What will my health care professional do with family health history information?Answer: Your health care provider will assess your risk of disease based on your family history and other risk factors. Your health care provider may also recommend things you can do to help prevent disease, such as exercising more, changing your diet, or using screening tests to detect disease early. How to compile your medical family tree Your family medical history — sometimes called a medical family tree or pedigree — is a record of illnesses and medical conditions affecting your family members. Similar to a family tree you might have drawn in school, a family medical history is a visual representation of the relationships among members of your family, but it also includes information for each person about diseases, age of disease onset, causes of death and other relevant health information. How is a family medical history used? You inherit half of your genetic profile from each parent. Along with the genetic information that determined your appearance, you inherited genes that may cause or increase your risk of certain medical conditions. Except for a relatively small number of genes, the identities of most disease-associated genes remain unknown. A family medical history can serve as a "substitute" genetic test to help your doctor interpret the history of disease in your family and identify patterns that may be relevant to your own health. Your doctor and other health care professionals may use your family medical history to: Assess your risk of certain diseases Recommend changes in diet or other lifestyle habits that can lower disease risk Recommend treatments that can modify disease risk Determine what diagnostic tests to order Determine the type and frequency of appropriate disease screening tests Determine whether you or family members should get a specific genetic test Identify a condition that might not otherwise be considered by your doctor Identify other family members who are at risk of developing a certain disease Assess your risk of passing conditions on to your children A family medical history can't predict your future health. With few exceptions, it only provides information about risk. Other factors — such as your diet, weight, exercise routine, other lifestyle habits, and exposure to pollutants or environmental factors — will also raise or lower your risk of developing certain diseases. How do you gather information about your family's medical history? Your family may want to work together on developing your family medical history. Therefore, holidays and reunions can provide a good opportunity for your relatives and you to gather information, fill in gaps in information, and talk to the "family historian," who may remember details about the health of deceased family members. Not everyone, however, may be comfortable disclosing personal medical information. Be aware of a number of factors that may contribute to a person's reluctance to discuss medical issues: Feelings of shame regarding certain illnesses, such as alcoholism or mental illness Painful memories associated with a condition, such as multiple miscarriages Denial about the history of disease in the family Cultural or generational differences that influence feelings about health issues and personal privacy A lack of understanding of medical conditions Perceptions that a family medical history has no value Consider the following strategies for addressing the issue with your relatives: Explain your purpose. Emphasize that your purpose is to create a record that will help you determine whether you and your relatives have a family history of certain diseases or health conditions. Offer to make the medical history available to other family members, so that they can share the information with their doctors. Provide several ways to answer questions. Some people may be more willing to share health information in a face-to-face conversation. Others may prefer answering your questions by phone, mail or e-mail. Word questions carefully. Don't start with personal questions. Begin your interview by asking questions about the whole family. When you begin discussing personal medical history, keep your questions short and to the point. Be a good listener. As your relatives talk about their health problems, let them speak without interruption. Listen without judgment or comment. Respect privacy. As you collect information about your relatives, respect their right to confidentiality. Some people may not want to share any health information with you. Or they may not want this information revealed to anyone other than you and your doctor. What other sources of information may be beneficial? You may want to consult other documents, such as existing family trees, baby books, old letters, obituaries or records from places of worship. Public records — birth certificates, marriage licenses and death certificates — are usually available in county record offices. If you are adopted, ask your adoptive parents if they received any medical information about your biological parents at the time of your adoption. Adoption agencies may also have family medical information on file. If you were adopted through an open adoption process, you may be able to discuss your family's medical history directly with members of your biological family. What information should you include in a family medical history? Your goal is to gather as much accurate information as possible. Don't expect to find answers to all your questions, and don't worry if some details are missing. If possible, your family medical history should include at least three generations. Compile information about your grandparents, parents, uncles and aunts, siblings, cousins, children, nieces and nephews, and grandchildren. For each person, gather the following information: Sex Date of birth For deceased relatives, age at the time of death and cause of death Diseases or other medical conditions Age of disease onset Diet, exercise habits, smoking habits or history of weight problems Ask about the occurrence of the following diseases and medical conditions often associated with genetic risk: Cancer Heart disease Diabetes Asthma Arthritis Mental illness High blood pressure High cholesterol Stroke Kidney disease Alcoholism or other substance abuse Birth defects Vision loss Hearing loss Learning disabilities Mental retardation Miscarriages or stillbirths Also include information about race and ethnicity because the risk of a particular disorder may be greater in one population group than in others. How do you compile the information into a family tree? Once you have gathered information about your family, create a medical family tree, or a diagram that visually depicts the relationships among family members. Record the medical information and other details about each person on your tree. If information about a disease or cause of death is unknown, don't guess at the answer. An incorrect guess can result in a poor interpretation of your medical history. You can find samples of medical family trees and a list of commonly used symbols for pedigrees at the Web sites of the American Medical Association and the National Society of Genetic Counselors. The office of the U.S. Surgeon General offers an electronic tool called My Family Health Portrait that provides a template for inputting information and generates a medical family tree for you. It is available in English and Spanish as an online tool or downloadable software. What should you do with a completed family medical history? Provide your doctor with a copy of your medical family history and ask him or her to review it with you. Your doctor may ask you questions for clarification and can help you interpret the relevance of certain patterns in your medical history. He or she may advise you immediately regarding preventive measures you can take or screening tests you should schedule. Update your family medical history every couple of years and provide your doctor with a revised copy. Why is family history important to health? Why is it important to know my family medical history? A family medical history is a record of health information about a person and his or her close relatives. A complete record includes information from three generations of relatives, including children, brothers and sisters, parents, aunts and uncles, nieces and nephews, grandparents, and cousins. Families have many factors in common, including their genes, environment, and lifestyle. Together, these factors can give clues to medical conditions that may run in a family. By noticing patterns of disorders among relatives, healthcare professionals can determine whether an individual, other family members, or future generations may be at an increased risk of developing a particular condition. A family medical history can identify people with a higher-than-usual chance of having common disorders, such as heart disease, high blood pressure, stroke, certain cancers, and diabetes. These complex disorders are influenced by a combination of genetic factors, environmental conditions, and lifestyle choices. A family history also can provide information about the risk of rarer conditions caused by mutations in a single gene, such as cystic fibrosis and sickle cell anemia. While a family medical history provides information about the risk of specific health concerns, having relatives with a medical condition does not mean that an individual will definitely develop that condition. On the other hand, a person with no family history of a disorder may still be at risk of developing that disorder. Knowing one's family medical history allows a person to take steps to reduce his or her risk. For people at an increased risk of certain cancers, healthcare professionals may recommend more frequent screening (such as mammography or colonoscopy) starting at an earlier age. Healthcare providers may also encourage regular checkups or testing for people with a medical condition that runs in their family. Additionally, lifestyle changes such as adopting a healthier diet, getting regular exercise, and quitting smoking help many people lower their chances of developing heart disease and other common illnesses. The easiest way to get information about family medical history is to talk to relatives about their health. Have they had any medical problems, and when did they occur? A family gathering could be a good time to discuss these issues. Additionally, obtaining medical records and other documents (such as obituaries and death certificates) can help complete a family medical history. It is important to keep this information up-to-date and to share it with a healthcare professional regularly. What are the different ways in which a genetic condition can be inherited? 1. What is a genetic consultation? 2. Why might someone have a genetic consultation? 3. What happens during a genetic consultation? 4. How can I find a genetics professional in my area? Why is family health history useful? Your family health history can help your health care practitioner provide better care for you. It can help identify whether you have higher risk for some diseases. It can help your health care practitioner recommend actions for reducing your personal risk of disease. And it can help in looking for early warning signs of disease. What are the key features of the Surgeon General's family health history tool? The Surgeon General's "My Family Health Portrait" is an internet-based tool that makes it easy for you to record your family health history. The tool is easy to access on the web and simple to fill out. It assembles your information and makes a "pedigree" family tree that you can download. It is private--it does not keep your information. It gives you a health history that you can share with family members or send to your health care practitioner. How long does it take to fill out the form? What do I do with it then? It should only take about 15 to 20 minutes to build a basic family health history. Individuals with larger families will spend more time entering in their information. Then you have the option of sharing it with other family members, if you wish. They may help provide information you didn't know. And relatives can start with your information and create their own history. You will also probably want to provide your health history to your health care practitioner. You and your health care practitioner should review it together before making it part of your medical record. What about my privacy? Does the government (or others, like my employer) have access to my information? The Surgeon General's family health history tool does NOT make your health information available to the government or to anyone else but you. It only provides the software for organizing your information. By accessing the tool on the web, you make use of that software. But the information you fill in is never available to anyone else, unless you decide to share it. After you fill in your information, it is available only to you for downloading into your own computer. After that, it's up to you whether you want to share the information with other family members or provide it to your health care practitioner. What if I need help in filling out the tool? The tool should be easy to complete. But help is available from the Application Support Desk at the National Cancer Institute's Center for Biomedical Informatics and Information Technology (CBIIT). You can contact the CBIIT help desk by email at ncicb@pop.nci.nih.gov and by telephone at 888.478.4423 (toll free) or 301-451-4384. The CBIIT help desk is open from 8:00 AM to 8:00 PM Eastern time, but they can take recorded messages from 8:00 PM to 8:00 AM Eastern time. The help desk can assist you with problems with the tool, but questions about your health history or medical conditions should be referred to a qualified health professional. Why is it important that the tool "re-indexes" as different family members use it? If you share your family health history with a relative, they can use your information as a starting point to create their own family health history. This is made even easier by re-indexing. "Re-indexing" means your relatives can make themselves the center of the information, start their own family health history, and the information that you provided is automatically readjusted to show its correct relationship to them. How can I encourage other family members to share their health information? Privacy is important, and no one should be forced to share personal health information if they don't wish to. But knowledge of family health histories may be spread over different family members, so sharing can help create the best product. Maybe the best way to encourage sharing is to help make it clear how this information can help health care practitioners provide better care and make more informed decisions. What security precautions should I take when I share information with relatives? Since the information that is aggregated by the FHH tool is personal health information, you should take reasonable precautions when sending this information to relatives. You should encrypt the information before sending it via email. If you don't have access to encrypted email; it may be better to transfer the information on a CD or memory stick; either in person or by regular mail. What if my knowledge about my family health history is incomplete or imprecise? Very few people are likely to have detailed and precise information about their family members/ health histories. But any information can be helpful. Once you have completed your history, it is important to talk about it with your health care practitioner. He or she may be able to help provide perspective, or even provide more detail based on the knowledge you bring. Why is it important that the tool is "EHR- and PHR-ready"? Electronic health records (EHRs) can help improve quality of care and improve cost-effectiveness of care at the same time. With interoperable EHRs, your health information can be available when and where it is needed--whether in an emergency, or merely when seeing a new physician. For EHRs to be useful, products like family health history need to be compatible and "EHR-ready." That way they can be embedded in EHRs (or in PHRs, the electronic "personal health record" maintained by the consumer). The Surgeon General's family health history tool is ready for use in EHRs. What is "clinical decision support"? How does it apply to family health history? "Clinical decision support" refers to software tools that help health care practitioners deliver the best quality care. These tools usually operate as a feature of EHRs. For example, these tools can alert a practitioner to potentially dangerous drug interactions by automatically matching a new prescription with the drugs a patient is already taking. Likewise the tools can remind a physician or consumer when certain procedures may be due. Such tools can interact with your health history information and help in forming personalized health recommendations. Can doctors use information from the tool even if they don't have EHRs? Yes. The most important goal is simply to record your information. The Surgeon General's family health history tool can help you do that easily. The information will be useful to you and your health care practitioner whether or not the practitioner uses electronic records yet. Will the family health history tool give me advice on actions I should take? No. The Surgeon General's tool helps gather information that will be useful for you and your health care practitioner, but it does not provide medical advice. You should consult with a health professional about advice based on your family health history information. |