Knowing your family’s health history is so important that a pending lawsuit in the UK may dramatically change medical confidentiality practices that have been in place for thousands of years. The ACSH reports on the case of a woman whom this article refers to as “Jane” for her privacy. Jane sued her father when he didn’t disclose his Huntington’s disease to her. She gave birth to a daughter, only afterwards learning of her hereditary risk for the disease; upon testing, she was found to have Huntington’s herself, and she may very well have unknowingly passed it onto her newborn.
So Jane filed a lawsuit claiming “that her father’s doctors had a duty to inform her of her father’s diagnosis regardless of his wishes.” She argued that, “had she known she had Huntington’s… she would have terminated her pregnancy rather than have a child who was at high risk of both having a life-destroying disease and being raised by a terminally ill single parent.”
While Jane’s case is an extreme one, it does highlight the importance of understanding your family health history, which can help you predict and often reduce your risk of hereditary illnesses. Here in the United States, the U.S. Surgeon General has declared Thanksgiving Day to also be National Family Health History Day, encouraging people to use the holiday as an opportunity to gather and update their collective knowledge of their family’s health.
As far as mental health goes, the National Health Institute states that autism, attention deficit hyperactivity disorder (ADHD), bipolar disorder, major depression, and schizophrenia all “tend to run in families, suggesting potential genetic roots.” Scientists continue to learn more about the connection between mental illness and genetics. Recently, the University of North Carolina School of Medicine co-led the largest study to date that looked at the potential genetic risk factors of depression: “[A] team of over 200 researchers were able to triple the number of gene variants currently associated with the disorder.” This research is a huge step toward understanding how to treat depression.
When you start collecting or updating your own family health history, there are several tips to keep in mind. The most useful information will come from your “first-degree” relatives, which include your parents, grandparents, siblings, and children. Anyone who is related to you by blood can provide useful information, but the closer in relation to you, the more directly pertinent the information is likely to be.
Here are some examples of questions to ask each family member:
- Do you have any chronic illnesses, such as heart disease, high blood pressure, or diabetes?
- Have you had any other serious illnesses, such as cancer or stroke?
- How old were you when you developed these illnesses?
- Have you or your partner had any difficulties with pregnancies, such as miscarriages?
- What medications are you currently taking?
You’ll also want to ask about other relatives, gathering information about your family ethnicity and ancestry, as well as deceased relatives and how they died.
The Surgeon General offers a free and private “My Family Health Portrait” online tool that allows you to enter your family health history and learn about your risk for certain conditions. It also allows you to share the findings with both your family and health care provider, and to update it over time. Healthline also offers this worksheet that you can use for each family member.
Likewise, Genes in Health offers free booklets that you can order online that will help you and your family members document and sort through your family health history. You can order multiple copies for your family members, or have them mail a copy to a family member for you.
Healthline notes that even incomplete information is helpful. They also offer tips for people who may be estranged from family members:
- Talk to the family members you’re connected with. You may not need to reconnect with your whole family to collect your family health history.
- Reach out via your doctor. Some medical offices may be able to send out questionnaires to family members asking for information in an official capacity. This may prompt people to respond.
- Do some research. You may be able to discover the cause of death of your relatives from death certificates. Search online to find state-specific death records or check ancestry sites for this information. Obituaries, often available online or archived by public libraries, might also provide health information.
While Thanksgiving Day gatherings may be a good setting for discussing your family health history, remember that not everyone will be eager to discuss these topics. This information may be painful or upsetting for some family members, or family members may not remember all the answers to your questions. Particularly tread lightly around questions concerning the deaths of close family members and miscarriages, as both of these experiences can be incredibly traumatizing for people to relive.
Remember to respect your family’s wishes and that there are multiple ways to get the information that you need. For example, your uncle may not want to discuss his bipolar disorder, but your cousin may have the information you need about it. Whenever and however you talk to your family about their health history, remember that all information can be helpful, and that info-gathering is an ongoing process.