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