Do you know your “health” family tree?

1. Do you know your “health” family tree? UGA Spring Seminar 2006

2. Today’s Roadmap • Why it’s important • How to collect one • Assessing your own family health history • Ethical issues • Resources

3. Why it’s important Genetics Family Health History Environment Behaviors

4. We all have a family history of something! diabetes allergies blue eyes high blood pressure autism leanness high cholesterol osteoporosis red hair height pre-term birth curly hair obesity stroke emphysema Alzheimer’s birth defects asthma cancer arthritis kidney disease

5. 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

6. 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

12. 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

13. 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 Toolkitwww.health.utah.gov/genomics

14. 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

15. 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

17. 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

18. Condition No.1st degree affected relatives (parents, siblings, children) No. 2nd degree affected relatives (grandparents, aunts and uncles) Ages at onset Age and cause of death Cancer (specify type) 0 1 (breast) 62 70, stroke Diabetes 1 0 45 Living Heart Disease 1 (high cholesterol) 3 (cong. heart failure, HCOM, arrhythmia) 60’s50’s 47 Living70, strokeLiving High Blood Pressure 2 unk Living Stroke 1 69 70, stroke Other 2 (depression) 2 (depression) 40’s, 16, 30’s, 30’s All living Step 2a: Review your family health history 0 0

19. Assessing your family health history Personalized prevention recommendations & referral for further evaluation High Risk Family Health History Moderate Risk Personalized prevention recommendations Reinforce standard prevention recommendations Average Risk Scheuner, et al. Am J Med Genet (1997), 71:315-324

20. Risk stratification criteria High Risk • Early disease in a 1st degree relative. • Early disease in a 2nd degree relative (coronary artery disease). • Two affected 1st degree relatives. • 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. • Two affected 2nd degree relatives with at least one having early onset disease. • Three or more affected family members. • Presence of a “moderate risk” family history on both sides of the family. Moderate Risk • One 1st degree relative with late or unknown onset of disease. • Two 2nd degree relatives from the same side of the family with late or unknown disease onset. Average Risk • No affected family members. • Only one affected 2nd degree relative from one or both sides of the family. • No known family history of disease. • Adopted person with unknown family history. Scheuner, et al. Am J Med Genet (1997), 71:315-324

21. Age 50 50 60 20 50 40 50 50 50 60 40 50 Disease Breast cancer Colon/colorectal cancer Coronary heart disease Diabetes Endometrial cancer High Blood Pressure Kidney cancer Ovarian cancer Prostate cancer Stroke or mini-stroke Sudden unexpected death Thyroid cancer When is “early onset” for a disease?

22. Condition Risk Level What risk criteria are met? Cancer (breast) Average #2 Only one affected grandparent from one or both sides of family. Diabetes Moderate #2 One parent with late or unknown onset of disease. (Overweight) Heart Disease Moderate – High #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) High Blood Pressure Moderate #2 Two uncles from the same side of the family with late or unknown disease onset. Stroke Average #2 Only one affected grandparent from one or both sides of family. Other (depression) High (depression) #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. Step 2b: Apply risk stratification criteria

23. 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)

24. 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)

25. 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

26. 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

27. 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

28. 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

29. Resources • Utah Department of Healthwww.health.utah.gov/genomics • Geneweaver Softwarewww.geneweaveronline.com/ • US Surgeon General Family History Initiativewww.hhs.gov/familyhistory/ • CDC Family History Websitewww.cdc.gov/genomics/public/famhistMain.htm

30. 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.

31. Contact • Jenny Johnson, CHESUtah Department of Health, Chronic Disease Genomics ProgramPhone: 801-538-9416Email: jennyjohnson@utah.gov • Visit our website at www.health.utah.gov/genomics