Uncovering the life stories of our ancestors can help us answer many questions about who we are. They not only may be fascinating; they can provide valuable insights into our identity that cannot be answered by searching within oneself. The stories and archival documents from the past are also an invaluable resource for revealing our family’s medical history. Whether discussing it with our elders or combing records in search of important dates and names, it’s worth taking the time to look for clues that can help confirm or predict disorders for which we might be at risk.
In 2004, the Surgeon General declared Thanksgiving Day National Family History Day. At times when families gather, we are encouraged to talk about and record the health issues that have touched the family. But whether with beloved family members or newly discovered relatives, asking health-related questions can be a sensitive topic. “Why,” people will want to know “are you asking these questions?”
A STORY OF DISCOVERY
In 1993 Stanley M. Diamond, the founder of Jewish Records Indexing – Poland, learned through his nephew’s diagnosis that his Ashkenazi family with roots in Poland carries a newly identified mutation of beta thalassemia, a hereditary blood trait a gene concentrated in Jewish families with Sephardic roots. His Beta-Thalassemia Project, now serves as a model for the link between genealogical research and the study of the evolution and spread of genetic diseases. He offers us some important advice on how to get the answers we need.
1.Researching your family’s medical history and making a genetic tree requires talking to everyone, and frequently more than once.
2. Don’t get caught wishing “If only!”. Talk with (and record) older generations now.
3. Face to face meetings are the best. When people have confidence in you, they are more likely to trust you with their medical history.
4. Allow the conversation to evolve. Don’t try to get all the information in one conversation.
5. Carefully posing the medical/genetic question: How you say it and what you say should be tailored to your own comfort level and the nature of the reaction.
6. Confidentiality must be respected; permission is necessary to share information.
RECORD AND SHARE
The Surgeon General has created an online tool, My Family Health Portrait, to help record your family’s health history. You can enter information, learn about risks for conditions that run within your family and share with your healthcare provider. Please remember confidentiality must be respected. It is helpful though, to let those we speak to understand this information can be valuable for others and to their future generations and respectfully ask for permission to share.
Research of this kind is also valuable to non-family members. After Diamond discovered his family carried a novel mutation of the Beta Thalassemia trait, it was revealed that another family in Jerusalem carries the identical mutation. It has since been revealed, with the help of The Beta-Thalassemia Project, that more than a few Ashkenazic families carry the trait and can be at risk for this disease — a fact previously unknown. Now Diamond’s research, which started from a desire to help his family, encourages other families to document their medical history and make better health decisions.
Whatever your reasons are for recording your family’s legacy – genealogical or genetic – we encourage you to ask questions with your elders before the opportunity is lost. And no need to wait for Thanksgiving – start today!