Information to collect:
- Write down the names of relatives on both sides of the family (ideally three generations): parents, children, grandchildren, siblings, grandparents, aunts/uncles, nieces/nephews, cousins. (Accessing a family tree may be helpful)
- Add for each person any information you have about their:
- sex at birth
- date of birth
- known medical and mental health conditions and age of diagnosis
- any other details about lifestyle, habits, environmental factors, results of any genetic testing.
(If a family member is deceased, note age at time of death, any known medical/mental health conditions, and cause of death)
Start the conversation!
- Identify the family members on each side (mother’s and father’s side) who might be most knowledgeable about your family members.
- Let them know the reason you would like to ask them some questions and the kinds of information you are seeking. Give them some time to think about it or to collect info if needed.
- Share any information you have gathered so far and then ask them to add more details where possible.
- Some family members may be uncomfortable discussing these matters. Respect the privacy of your relatives as confidential information is shared. Let them know that having this information gathered will benefit ALL family members.
- The information can be gathered in person, by phone, or in writing – whatever is most comfortable and most convenient. In cases where information is incomplete, just include what is accurately known. Do not guess.
- Sometimes medical records and family documents like scrapbooks can fill in some blanks, as can public records.
What to do with the information you’ve collected:
- Create a written document (or see below for online options) with the collected family history information gathered.
- Share copies with other family members for them to share with their own doctors to inform them of their family health history.
- Give a copy of the Family Health History to your doctor for their records and review it with them. The document can help your doctor look for early warning signs of disease and recommend steps for reducing your personal risk of disease.
- Questions to ask your doctor about review of your Family Health History:
- Does my family history put me at risk for certain conditions or diseases? Other members of my family?
- Are there any screening tests I should have now or in the future?
- Should I have genetic counseling or genetic testing?
- What lifestyle recommendations do you have to reduce my risk?
- What information should I share with other family members?
- Be sure to update the records over time and provided updated copies to family members. This can be a valuable document for future generations as well.