Do you know your health family tree

Do you know your “health” family tree? UGA Spring Seminar 2006 Today’s Roadmap • Why it’s important • How to collect one • Assessing your own family health history • Ethical issues • Resources Why it’s important Genetics Family Health History Behaviors Environment We all have a family history of something! diabetes autism high cholesterol osteoporosis red hair pre-term birth obesity emphysema height curly hair stroke Alzheimer’s allergies high blood pressure blue eyes leanness birth defects asthma arthritis cancer kidney disease Why it’s important • “Knowing your family health history can save your life. The earlier you know which health conditions run in your family, the easier it is to develop prevention plans with your doctor.” – Dr. Richard H. Carmona, U.S. Surgeon General How to collect one • You already collect family history but… – Only need a 3 generation pedigree – Blood relatives most important – Emphasis on health and behaviors • Lots of tools How to collect one • Close family members – Parents, siblings, grandparents, children – Then aunts/uncles, cousins, nieces/nephews • Health problems of family members • Age when problem started or was diagnosed • Age and cause of death • Lifestyle habits (diet, exercise, weight, smoking) • Ethnic background How to collect one • Talk about it – Holidays, family gatherings, reunions, new baby, etc. • Write it down • Share it with doctor and family • Use the Family Health History Toolkit www.health.utah.gov/genomics How to collect one • Look in your genealogical records – – – – – Death and birth certificates Funeral home records Obituaries United States Censuses Journals, military records, hospital or insurance forms ***Watch for old medical terms*** • Best source is your living family members Assessing your family health history • Step 1: Write down your family history of health conditions in your first and second degree relatives on your worksheet – Take 10 minutes Your Family Health History Name: Jenny Date: March 29, 2006 Instructions: Fill out the table below. If your family member had one of these health conditions, write down the age they were diagnosed with it in the box for each disease. Family member You Father Mother Siblings Brother Sister Brother Living or Dead? living living living living living Age now or Cause of Cancer Diabetes Heart age at death death (specify type) Disease 24 49 49 23 18 11 Cholesterol(44) 45 High Blood Pressure Stroke Other Asthma 13 Allergies 20's Depression 40's Depression 16 Children Grandparents (Father's side) Grandpa Grandma living dead 73 70 stroke Breast 62 Early 60's Late 50's Asthma unk. 69 Grandparents (Mother's Grandpa Grandma living living living living unknown 75 71 Arrhythmia 47 Asthma 60 Depression 30's Depression unk. Aunts/Uncles Aunt (1) Uncles (2) Assessing your family health history • Step 2a: Review your family health history – Summarize what you learned in Table 1 • Step 2b: Apply risk stratification criteria – Record what you learned in Table 2 – Take 10 minutes Step 2a: Review your family health history Condition No.1st degree affected relatives (parents, siblings, children) 0 No. 2nd degree affected relatives (grandparents, aunts and uncles) 1 (breast) Ages at onset 62 Age and cause of death Cancer (specify type) Diabetes Heart Disease 70, stroke 1 1 (high cholesterol) 0 3 (cong. heart failure, HCOM, arrhythmia) 2 45 60’s 50’s 47 unk Living Living 70, stroke Living Living High Blood Pressure Stroke Other 0 0 2 (depression) 1 2 (depression) 69 40’s, 16, 30’s, 30’s 70, stroke All living Assessing your family health history High Risk Personalized prevention recommendations & referral for further evaluation Family Health History Moderate Risk Personalized prevention recommendations Average Risk Reinforce standard prevention recommendations Scheuner, et al. Am J Med Genet (1997), 71:315-324 Risk stratification criteria High Risk 1. Early disease in a 1st degree relative. 2. Early disease in a 2nd degree relative (coronary artery disease). 3. Two affected 1st degree relatives. 4. One 1st degree relative with late or unknown disease onset and an affected 2nd degree relative with early disease from the same side of the family. 5. Two affected 2nd degree relatives with at least one having early onset disease. 6. Three or more affected family members. 7. Presence of a “moderate risk” family history on both sides of the family. Scheuner, et al. Am J Med Genet (1997), 71:315-324 Moderate Risk 1. One 1st degree relative with late or unknown onset of disease. 2. Two 2nd degree relatives from the same side of the family with late or unknown disease onset. Average Risk 1. No affected family members. 2. Only one affected 2nd degree relative from one or both sides of the family. 3. No known family history of disease. 4. Adopted person with unknown family history. When is “early onset” for a disease? Disease Age Breast cancer 50 Colon/colorectal cancer 50 Coronary heart disease 60 Diabetes 20 Endometrial cancer 50 High Blood Pressure 40 Kidney cancer 50 Ovarian cancer 50 Prostate cancer 50 Stroke or mini-stroke 60 Sudden unexpected death 40 Thyroid cancer 50 Step 2b: Apply risk stratification criteria Condition Cancer (breast) Risk Level Average What risk criteria are met? #2 Only one affected grandparent from one or both sides of family. #2 One parent with late or unknown onset of disease. (Overweight) #1 Early disease (cholesterol) in parent. #2 Two grandparents from the same side of the family with late or unknown disease onset. #6 Three or more affected relatives. (Grandpa smoked heavily) Diabetes Moderate Moderate – High Heart Disease High Blood Pressure Moderate #2 Two uncles from the same side of the family with late or unknown disease onset. #2 Only one affected grandparent from one or both sides of family. #3 Two affected parents, children, or siblings. #1 Early disease in a parent, child, or sibling. #5 Two affected grandparents, aunts/uncles with at least one having early disease onset. Stroke Average Other (depression) High (depression) Assessing your family health history Colon ca dx 76 Colon ca dx 76 Colon ca dx 46 Colon ca dx 65 Ovarian ca dx 51 Colon ca dx 44 Average Risk (Sporadic) Moderate Risk (Familial) High Risk (Hereditary) Assessing your family health history • Your risk may be increased if… – Early age of onset – 2 or more close family members w/ disease – 2 or more generations w/ disease – Disease in less often affected sex (breast cancer in males) – Related conditions (heart disease and diabetes) Assessing your family health history • Step 3: Make a plan for better health – What are your health habits now? – What can you do better? – Are there prevention guidelines? – Take 5 minutes You can’t change your genes… • but you can change your behaviors! – – – – Eat healthy Physical activity Stop smoking Get early or frequent screenings – Talk to your doctor or see a specialist • Work with your family to make healthy choices that can lower your risk Ethical Issues • Quality of information • Privacy issues – What if you have a genetic predisposition? Do you tell your family? Do they want to know? • Fear of discrimination based on genetics – Health insurance – Life insurance – Employment Ethical Issues • Legislation – Utah Genetic Testing Privacy Act, 2002 – HIPAA, ADA offer protection • No federal legislation!!! • Family health history may not be protected in all instances but… – few cases of genetic discrimination occurring Resources • Utah Department of Health www.health.utah.gov/genomics • Geneweaver Software www.geneweaveronline.com/ • US Surgeon General Family History Initiative www.hhs.gov/familyhistory/ • CDC Family History Website www.cdc.gov/genomics/public/famhistMain.htm Resources • Shawker, Thomas H. Unlocking your genetic history: A step-by-step guide to discovering your family’s medical and genetic heritage. Rutledge Hill Press, 2004. • Daus, Carol. Past Imperfect: How tracing your family medical history can save your life. Santa Monica Press, 1999. • Bennett, Robin L. The practical guide to the genetic family history. Wiley-Liss, Inc., 1999. • Milunsky, Aubrey. Your genetic destiny. Perseys Publishing, 2001. Contact • Jenny Johnson, CHES Utah Department of Health, Chronic Disease Genomics Program Phone: 801-538-9416 Email: jennyjohnson@utah.gov • Visit our website at www.health.utah.gov/genomics